Content uploaded by Nicholas Chown
Author content
All content in this area was uploaded by Nicholas Chown on Aug 07, 2017
Content may be subject to copyright.
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
GENERAL ENTRY – THEORETICAL MODELS AND AUTISM
A. Your Address
Nick Chown Luke Beardon
Independent scholar Sheffield Hallam University
Palau-solità i Plegamans, Barcelona Sheffield, South Yorkshire
Spain United Kingdom
B. Definition
In this entry the authors want to introduce you to some theoretical models of autism based on the three main
models of disability – the medical model, the social model, and the bio/psycho/social model – which we will review
briefly first. But there are two terminology matters to consider before we begin. We explain why we use autism-first
language in this entry. And we explain some terms introduced by Ian Hacking and Carol Thomas, an understanding
of which is crucial to our discussion of the theoretical models.
We use autism-first language throughout this entry. That is because this form of language is generally preferred to
person-first language by autistic adults. Although Dunn and Andrews argue that both forms should be used ‘to
address the concerns of disability groups while promoting human dignity and maintaining scientific and professional
rigor’ (2015, p. 255) we are unaware of any evidence that respecting the views of the majority of autistic adults in
this regard impacts adversely on scientific and professional rigour.
We also need to reflect on some terms introduced by Ian Hacking (1999) and Carol Thomas (1999, 2004) which
form part of the framework of models. The terms we refer to are ‘indifferent kind’ and ‘interactive kind’ (Hacking)
and ‘impairment effects’ (Thomas). We also need to consider the essential differences between the main models of
disability i.e., the medical, social, and bio/psycho/social models. Those who regard autism as cognitive, perceptual
and sensory difference object to the term ‘impairment’. They would presumably also object to the term ‘impairment
effects’. We use this term in our framework of autism models for the same reason Thomas introduced it; to
distinguish between the inherent effects of an impairment and the additional, avoidable, societal effects. Those who
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
agree with us that autism involves a set of differences (we do not subscribe to the view that all autistic individuals
are inherently impaired) could substitute ‘difference effects’ or ‘inherent disadvantages’ for ‘impairment effects’.
In ‘The Social Construction of What?’ Hacking (1999) discusses the increasingly widespread use of the concept of
social construction and of things being socially constructed using examples such as authorship, the child viewer of
television, danger, emotions, gender, and illness. He argues that in many cases it is only superficially correct to
refer to something as being socially constructed since every concept people invent is socially constructed in the
trivial sense that all human concepts are the result of social interaction. The two terms he has introduced are
designed to highlight the distinction between the kind of things that can interact with the people who are of that kind
and those things that do not interact in that way; the former falling into the category of ‘interactive kind’, and the
latter in the category of ‘indifferent kind’. Examples should make the difference clear. Hacking uses the concept of
the ‘woman refugee’ to explicate the idea of an interactive kind; the important point here being that when a woman
knows that she is classified as a ‘woman refugee’ she may, unknowingly or not, begin to act as a woman refugee,
that is behaving in ways she would not if unaware of her classification. In the same way, an autistic person may
start analysing their behaviour after receiving a diagnosis of autism, explaining past behaviour from the perspective
of autism, and perhaps being less likely to mimic non-autistic behaviour (especially in a setting where autism is
accepted as natural human difference). Thus a diagnosis of autism may interact with the individual diagnosed to
change behaviour and is, therefore, an interactive kind. The opposite of an interactive kind is an indifferent kind
where no interaction effect between the concept and the thing itself is possible. For instance, to use a couple of
Hacking’s examples, neither quarks nor microbes, even though the latter interacts with human beings, are aware of
what they do and so are said to be indifferent to their classification as quarks and microbes (we think that 'unaware'
would have been a better choice of term as 'indifferent' implies the holding of a view by a thinking being). Likewise,
a cognitive difference in autism is indifferent to, or unaware of, its status as a cognitive difference prior to the
autism being identified and understanding of the difference having developed.
Much has been written about disability models. We only have space to draw attention to the fundamental difference
between the medical model of disability and the social model of disability and position the bio/psycho/social model.
Whilst the medical model places the ‘fault’ for being disabled fairly and squarely with the individual, under the social
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
model disability is seen as the result of attitudes and barriers imposed by society over and above an individual’s
impairments. Unlike the other two models, the bio/psycho/social model acknowledges biological, psychological,
and social disabling/disadvantaging effects.
Realising that not all disabling effects are the fault of society, Thomas introduced the term ‘impairment effects’ to
enable a distinction to be drawn between the inherently disabling effects of a perceived impairment and the effects
of the attitudinal and physical barriers placed in the way of individuals with impairments by society. In the context of
autism one might want to say, for example, that the difficulties arising from sensory sensitivities may not always be
something that society can do anything to ameliorate. But failure to appreciate the strengths in autism, and enable
an individual to make the most of those strengths, is a barrier that society should work to remove.
C. Historical Background
We now introduce the medical, social, and bio/psycho/social models of disability before considering autism from the
perspectives of these three models, comparing the perspectives, and drawing some conclusions.
Medical model of disability
The historical background here is that autism, inevitably because it relates to a series of medical diagnoses
beginning with ‘infantile autism’ in the ninth revision of the World Health Organization’s International Classification
of Diseases (ICD-9) published in 1979, and a year later in the third edition of the American Psychiatric
Association’s Diagnostic and Statistical Manual (DSM-III), has been seen through the lens of the medical model of
disability (also known as the individual model). The medical model of disability has been described by a Cerebral
Palsy group as:
a model by which disability is the result of a physical condition, is intrinsic to the individual (it is part of that
individuals own body), may reduce the individuals quality of life, and causes clear disadvantages to the
individual. By this model, a compassionate or just society should invest resources to attempt to cure
disabilities medically or to improve functioning
(http://www.livingwithcerebralpalsy.com/social-disability.php)
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
The main criticism of the medical model of disability is that it equates disability solely with impairment, ignoring the
involvement of social, cultural and environmental factors in the construction of disability. The medical model has
been said to attach blame to the individual for their disability and in that respect it is, at least, consistent with what
Reindal refers to as the 'many historical examples of individualising social problems: explaining poverty and
unemployment as a result of idleness and character weakness; crime as a result of ‘moral insanity’ (Reindal, 2008,
p. 141). In this context, with disability being seen as the fault of the disabled person, society has little or no
responsibility for looking after them, let alone for implementing change in order to reduce the impacts of societal
barriers (because there is no recognition of the barrier concept). Over time, societal attitudes began to change and
disability was increasingly seen as a personal tragedy for the ‘unfortunate individual with impairments. As Reindal
writes, 'This approach … promoted attitudes of paternalism and mechanisms of dependency … within society'
(Reindal, 2008, p. 141) which led to a more caring or charitable attitude towards to disabled people, but still with no
acknowledgement that society was itself the primary cause of disability.
Social model of disability
A great deal remains to be done to ensure that people with disabilities1 are enabled to take their rightful places as
fully-fledged citizens within society, there is still much lip service paid to anti-discrimination, and the practice of
'exclusion through nominal inclusion' (Thomas, 2006, p. 177) is, perhaps, more prevalent than substantive
inclusion. However, the advent of the social model of disability in the mid-1970s has had a profound impact on
disability advocacy and outcomes since its development through the work of the Union of the Physically Impaired
Against Segregation (UPIAS), including the disabled scholar and activist Michael Oliver. The Cerebral Palsy group
referred to in relation to the medical model of disability describe the social model of disability as follows:
the 'social model' of disability, makes a clear distinction between the impairment itself (such as a medical
condition that makes a person unable to walk) and the disabling effects of society in relation to that
impairment. In simple terms, it is not the inability to walk that prevents a person entering a building unaided
but the existence of stairs that are inaccessible to a wheelchair-user. In other words, 'disability' is socially
constructed.
(http://www.livingwithcerebralpalsy.com/social-disability.php)
1
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
Whilst it is probably true to state that there is more rhetoric from organisations claiming to apply the principles of
the social model of disability than actual application of those principles, even critics of the social model must accept
that its development and increasing level of adoption has led to major benefits for disabled people. With eminent
justification this model is often referred to as the ‘big idea’ of the disability movement.
Bio/psycho/social model of disability
The International Classification of Functioning Disability and Health (ICF) is the framework developed by the World
Health Organization (WHO) for measuring health and disability at both individual and population levels. It was
officially endorsed by all 191 WHO Member States at the 54th World Health Assembly held on 22 May 2001. The
ICF is a classification of health and health-related domains based on bodily, individual, societal, and environmental
perspectives through placing individuals on lists of bodily functions, activity limitations, and environmental factors.
The ICF is said to complement the ICD diagnostic manual, referred to earlier, which comprises a classification of
diagnoses based on aetiology. The WHO has written that:
The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being
can experience a decrement in health and thereby experience some degree of disability. Disability is not
something that only happens to a minority of humanity. The ICF thus ‘mainstreams’ the experience of
disability and recognises it as a universal human experience. By shifting the focus from cause to impact it
places all health conditions on an equal footing allowing them to be compared using a common metric –
the ruler of health and disability. Furthermore ICF takes into account the social aspects of disability and
does not see disability only as a ‘medical’ or ‘biological’ dysfunction.
https://ec.europa.eu/eip/ageing/standards/healthcare/e-health/icf-browser_en
The WHO regard the ICF as following what they call a biopsychosocial model of disability that 'synthesizes what is
true in the medical and social models, without making the mistake each makes in reducing the whole, complex
notion of disability to one of its aspects' (WHO, p. 9). Reindal writes that the understanding of disability within the
ICF is about restricted activities and an inability to do things that others can do, that it 'is a weaker framework for
theorising about empowerment and autonomy for disabled people, as goals for participation rest on norms related
to normality' (Reindal, 2008, p. 138) and, perhaps most importantly of all given the importance of oppression to the
founders of the social model, the issue of oppression is lost in Reindal’s view.
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
D. Current Knowledge – Theoretical models of autism and autism theory
We aim to explain the five elements of a proposed framework of models of autism (see Table 1), which could also
be described as a framework of perspectives on autism from which autism theory – which we discuss in a separate
entry – can be viewed. These perspectives include one in which autism is regarded as nothing more than a label
applied by classificatory systems to something that is a reified category with no existence other than as a
conglomeration of unconnected behaviours (i.e., it is entirely socially constructed). The other four perspectives
regard autism as something ‘real’ in that it has a biological/neurological cause, at least in part, as well as socially
constructed aspects. The opposite of the ‘denial’ of those who consider autism to be no more than a label is the
medical model perspective whereby autism is generally considered to be entirely biological/neurological in nature.
However, in our view, even a medical model perspective on autism should incorporate socially constructed
elements as we hope to make clear. We now consider each of the five sections of our framework of perspectives
on autism.
Table 1: A framework of perspectives on autism (autism models)
Category Kind Cause
1. Autism as nothing more than a label – social model
Diagnosis (label) Interactive kind Socially constructed
2. Autism as cognitive/perceptual/sensory difference – social model
Differences Indifferent kind Bio/psycho causation
Societal effects pre-diagnosis Indifferent kind Socially constructed
Societal effects post-diagnosis Interactive kind Socially constructed
Diagnosis* (label) Interactive kind Socially constructed
3. Autism as disability in a lay sense – social model
Impairments Indifferent kind Bio/psycho causation
Impairment effects Indifferent kind Bio/psycho causation
Disability (societal effects)
pre-diagnosis Indifferent kind Socially constructed
Disability (societal effects)
post-diagnosis Interactive kind Socially constructed
Diagnosis (label) Interactive kind Socially constructed
4. Autism as disability in a lay sense – bio/psycho/social model
Impairments Indifferent kind Bio/psycho causation
Impairment effects Indifferent kind Bio/psycho causation
Societal effects pre-diagnosis Indifferent kind Socially constructed
Societal effects post-diagnosis Interactive kind Socially constructed
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
Diagnosis (label) Interactive kind Socially constructed
5. Autism as disability in a lay sense – medical model
Impairments Indifferent kind Bio/psycho causation
Disability Indifferent kind Bio/psycho causation
Societal effects pre-diagnosis** Indifferent kind Socially constructed
Societal effects post-diagnosis Interactive kind Socially constructed
Diagnosis (label) Interactive kind Socially constructed
* Those who see autism as a set of differences do not consider that it should be included in diagnostic manuals.
** Seemingly unacknowledged societal effects.
We understand why Runswick-Cole (2016, p. 27, our italics) writes that it would be far better to have a support
service for people currently labelled with autism ‘that labels people, but only with their names’. She stresses the
importance of practitioners asking questions about a person rather than a disorder, and offering to help them
achieve their aspirations ‘rather than intervening to “correct” perceived symptoms and deficits’. We agree with
Runswick-Cole that it is essential to consider an individual’s unique needs, especially as the effects of autism vary
so greatly. It is also unarguable that the label of autism is generally needed to enable access to support where it is
available. However, although some scholars may consider dispensing with this label to be a valid longer-term
objective, we disagree, as the label has helped many autistic individuals to achieve a better understanding of
themselves. There are even, as Goodley (2016, p. 147) correctly states, those who ‘have suggested that autism is
nothing more than a myth perpetuated by the biopolitics of psychiatry and psychology’. This is not the place to
mount a challenge to those who believe autism is only a label. However, holding this view is to be utterly dismissive
of leading clinical expertise beginning with Asperger and Kanner, the experiences of those for whom becoming
aware that they are autistic has been transformational, and the experiences of parents of autistic children.
We now move on to consider the other elements of the framework: autism as cognitive/perceptual/sensory
difference, and as disability, from the perspectives of the three main disability models: the medical model, social
model, and bio/psycho/social model. Members of the general public would usually regard autism as a disability in
the sense of being something inherent in the individual that has an adverse effect on their ability to function in
society to the fullest extent (though it should be noted that such judgements are made from a predominant
neurotype (non-autistic) perspective and, therefore, may not be valid for all autistic individuals). This lay
understanding of disability contrasts with the social model perspective on disability as attitudinal and physical
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
barriers socially constructed by society in addition to impairments/differences. Whether understood as impairments
or differences, matters caused biologically/neurologically are indifferent kinds according to Hacking’s definition
because there is no interaction effect between them and the individual autistic person; the impairments/differences
are simply what they are. We think that the societal effects are also indifferent kinds prior to receipt of a diagnosis –
because at this stage they cannot interact with the individual and change behaviour – but may transform into
interactive kinds after diagnosis when the diagnosed individual becomes aware of them and reflects on their effects
on him or her. Even in the case of the model regarding autism as nothing more than a label, we are in no doubt that
a diagnosis is an interactive kind because it can interact with the individual and thus carries the potential to change
behaviour.
We argue that autism involves impairment effects as understood by Thomas and societal effects. The social
difficulties and sensory sensitivities in autism may have disabling effects to which society adds a layer of attitudinal
and physical barriers that further disable. Although the medical model regards autism as a set of impairments that
themselves disable an individual it seems to us that those who adopt a medical model perspective should
acknowledge that societal effects do exist; those who consider that impairments result in disability should accept
that impairments do not cause disabling attitudinal and physical barriers. Ignoring the label-only model, there is little
difference between the models. In each case there are impairments/differences – which may disadvantage – an
overlay of disabling societal effects, and the potential for behaviour change following receipt of a diagnosis.
We contend that those who advocate a medical model perspective on autism – that disability arises from
impairments – should acknowledge the existence of certain societal effects (because, as we believe we have
shown, it cannot be argued that all the disadvantages associated with autism result from 'impairment'). When
seemingly unacknowledged societal effects are included in a medical model perspective the result is not unlike a
bio/psycho/social model. If a social model perspective does not ignore the impairment effects Thomas wrote of it is
also virtually indistinguishable from a bio/psycho/social model. We are aware that some scholars dislike the
bio/psycho/social model with a passion. We do not consider that rejection of a medical model perspective on
autism of necessity requires autism to be viewed as a social construct in a non-trivial sense as Shyman (2015, p.
73) appears to believe having written that ‘the medical model of viewing autism is overtly rejected in favor of
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
viewing it as a social construct’. [In a trivial sense, autism and every other diagnosis, together with the diagnostic
manuals themselves, and the psychiatry and psychology that led to the development of these manuals, are socially
constructed.] We argue that it is the idea of autism as a disorder that is socially constructed in a non-trivial sense,
and that medical diagnosis would not be as necessary as it is currently if society accommodated the differences in
autism, whilst stressing the importance of identifying individuals who are autistic. Formal identification (diagnosis) of
autism is essential to: (1) help autistic individuals to better understand themselves; (2) assist those who live and
work with autistic people to support them; and (3) enable the authorities to implement ad hoc environmental
adaptations for those who need them. To be clear, we are saying no more than that it is wrong to medicalise a set
of cognitive, perceptual, and sensory differences. We do not deny the effects autism can have on the lives of
individuals and their families/carers. Neither do we challenge the role of clinicians in relation to autism whilst it
remains necessary for individuals to be diagnosed as autistic to secure protection under disability discrimination
legislation (such as the UK’s Equality Act, 2010) and access to whatever local authority support is available.
E. Future Directions – for autism research
This section is a combination of a reflection on the Pellicano et al. paper (2014) alongside a summary of our
rationale for certain types of research being more advantageous than others because of our belief that research in
autism should be focused primarily on supporting individuals with cognitive, perceptual, and sensory differences to
achieve the fullest life possible in every respect (education, relationships, work etc.). Pellicano and colleagues
identified the following six types of funded autism research over a three year period specific to the UK (along with
the percentage of funding allocated to each type of research over those three years):
1. Biology, brain, and cognition - 56%
2. Treatment and interventions - 18%
3. Causes - 15%
4. Diagnosis, symptoms, and behaviours - 5%
5. Services - 5%
6. Societal issues - 1%
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
The reaction from the autism community was almost entirely negative, with autistic adults suggesting that research
follows a non-autistic agenda, and parents reflecting that research fails to accurately reflect the reality of the lived
experience of autistic individuals. It is not possible to simply identify what is 'good' research and what is 'bad'
research in terms of type, but it is worth identifying questions that might enable researchers to ascertain the
purpose of their research and what potential impact it might have. This, in turn, might enable funders to understand
the efficacy and purpose of research aims. We suggest the following questions provide a structure within which
research can be framed:
1. Does the research engage directly with the autism community?
2. Does the research engage with autistic individuals as 'subjects' or as co-researchers?
3. What potential impact might the research have on autistic individuals?
4. What impact might the research have on those associated with autism (e.g., parents, carers,
professionals)?
5. Is the main purpose of the research to directly or indirectly influence quality of life for the autistic
population?
6. Does the research intend to establish new knowledge that can influence practice that will have a positive
influence within the autism community?
7. How might the research enable practitioners to develop better practice?
8. How involved are autistic people in the aims of the research and the project design?
9. Does the research fulfil or acknowledge any criteria identified by the autism community as needing
investigation?
Clearly this list of questions is not exhaustive, but it does provide a structure within which the purpose of research
and its potential links to practice can be explored. Chown et al. (2017) have developed a more detailed framework
of criteria for what they refer to as ‘inclusive’ autism research i.e., research which is both emancipatory and
participatory. Neither we nor they dismiss research that may not influence the day-to-day lived experience of
autistic individuals entirely; however, it is acknowledged that the current funding of autism research does not reflect
the views of the autism community and we suggest that this needs addressing as a matter of urgency.
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102171-1
F. See also
Autism theory – Chown, N. & Beardon, L.
G. References and Readings
Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., Fox, K., Hickman, L. & MacGregor,
D. (2017). Improving research about us, with us: a draft framework for inclusive autism research. Disability &
Society, 32(5), 1-15.
Dunn, D. S., & Andrews, E. E. (2015). Person-First and Identity-First Language: Developing Psychologists’ Cultural
Competence Using Disability Language, American Psychologist, 70(3), 255-264.
Goodley, D. (2016). Autism and the human. In Re-Thinking Autism: Diagnosis, Identity and Equality, (Eds.
Runswick-Cole K., Mallett, R. & Timimi, S.), London: Jessica Kingsley Publishers.
Hacking, I. (1999). The Social Construction of What? Harvard: Harvard University Press.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views
and priorities from the United Kingdom. Autism, 18(7), 756-770.
Reindal, S.M. (2008). A social relational model of disability: a theoretical framework for special needs education?,
European Journal of Special Needs Education, 23(2), 135-146.
Runswick-Cole, K. (2016). Understanding this thing called autism. In Re-Thinking Autism: Diagnosis, Identity and
Equality, (Eds. Runswick-Cole K., Mallett, R. & Timimi, S.), London: Jessica Kingsley Publishers.
Shyman, E. (2015). Besieged by Behavior Analysis for Autism Spectrum Disorder: A Treatise for Comprehensive
Educational Approaches. Lanham, Maryland: Lexington Books.
Thomas, C. (1999). Female Forms: Experiencing and Understanding Disability. McGraw-Hill Education (UK).
Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society,
19(6), 569-583.
Thomas, C. (2006). Disability and gender: Reflections on theory and research. Scandinavian Journal of Disability
Research, 8(2-3), 177-185.
