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Theoretical Models and Autism

The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
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 disabilitythe 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
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
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
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
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
The Version of Record of this manuscript has been published in the Encyclopedia of Autism
Spectrum Disorders and is available from SpringerLink at
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.
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
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
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Spectrum Disorders and is available from SpringerLink at
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
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
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
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%
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Spectrum Disorders and is available from SpringerLink at
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,
5. Is the main purpose of the research to directly or indirectly influence quality of life for the autistic
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
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
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.
... Autistic reports also indicate that autistic people are misunderstood by non-autistic others resulting in stigma (Dekker, 1999;Chell, 2006;Chown and Beardon, 2017;Treweek et al., 2018). Moreover, media representations have largely focussed on autism as an illness that is a burden to others (Clarke, 2011;Huws and Jones, 2011;Sarrett, 2011;Brownlow et al., 2015), framing autism in terms of a deficit rather than a difference from a neurotypical majority norm (Smukler, 2005;Ortega, 2009;Kapp et al., 2013;Ridout, 2017). ...
Full-text available
Research on how autistic people are perceived by neurotypical people indicates that disclosing a diagnosis leads to a positive discriminatory bias; however, autobiographical autistic accounts indicate that diagnostic disclosure often results in negative discriminatory behaviour. We report on an exploratory study to compare people’s self-reported helping behaviour with their actual helping behaviour towards an assumed autistic collaborator. We led 255 participants to believe that they were interacting online with a real person to play Dyad3D, a maze navigation game where players must work together to open doors and complete the levels. However, participants were actually playing with an artificial confederate (AC) that is programmed to behave the same way across all interactions. This design enabled us to manipulate the diagnostic status of the AC that participants received prior to collaboration across three conditions: no disclosure, dyslexia-disclosure and autism-disclosure. We use this method to explore two research questions: (1) is Dyad3D viable in creating a simulated interaction that could deceive participants into believing they were collaborating with another human player online? and (2) what are the effects of disclosing an autism diagnosis on social perception and collaboration? Combined with a post-game questionnaire, we compared differences between diagnostic conditions and differences between self-reported behaviour and actual behaviour in the game. Our findings show that Dyad3D proved to be an efficient and viable method for creating a believable interaction (deception success rate >96%). Moreover, diagnostic disclosure of autism results in the AC being perceived as more intelligent and useful, but participants also perceived themselves to be more helpful towards the AC than they actually were. We evaluate the strengths and limitations of the current method and provide recommendations for future research.
... This chapter outlines the methodological approach of the thesis. Before discussing the methodological challenges identified in Chapter 3 for each respective study, it is important to acknowledge a wider methodological challenge concerning the validity gap between research conducted on autism and the research interests of autistic people themselves (Nick Chown & Beardon, 2017;Jaswal & Akhtar, 2018;Pellicano et al., 2014b;Verhoeff, 2015). This chapter first sets the context for this issue and outlines the motivation for taking an abductive approach to research, which "provides a way to think about research, methods and theories that nurtures theory construction without locking it into predefined boxes" (Tavory & Timmermans, 2014, p. 4). ...
Research on autism, which is defined as a life-long developmental disability affecting social interaction, has focussed predominantly on how autistic individuals perceive and interact with others with less emphasis on the perspectives of their interactional partners. Yet autistic viewpoints have highlighted how other people are part of a two-way breakdown in interaction originating from differences between people rather than the deficit of any one individual, a phenomenon known as the double empathy problem. A gap therefore exists in the literature in terms of understanding how autistic sociality (i.e. the range of social opportunities possible for a given individual on the spectrum) is shaped by different interactional partners. This thesis examines the double empathy problem in three interactional contexts. Study 1 examines relationships between autistic people and their family members through focussing on perspective-taking, the ability to impute mental states to others. In light of prior research where autistic abilities have been assessed using abstract scenarios, Study 1 implements a two-way measure of perspective-taking which considers both sides of 22 real-life relationships (n=44) consisting of autistic adults and their family members, to understand how autistic people are seen by familiar others as well as vice versa. It uses a mixed-methods approach, where members of each dyad were individually asked about 12 topics, providing quantitative scores and qualitative explanation of their rating of Self, their rating of their partner, and their predicted rating by their partner. Comparison of perspectives provided a means for detecting misunderstandings and their underlying rationale. The contribution of Study 1 is that it shows perspective-taking is two-sided: family members can be biased in underestimating the perspective-taking of their autistic relatives, while autistic adults are aware of being negatively viewed despite disagreeing with such views. Study 2 examines interactions between autistic adults (n=30) partaking in a naturally occurring activity of video-gaming at a charity. It is a qualitative study using participant observation, with each conversational turn systematically rated in terms of coherence, affect and symmetry to identify the key features of neurodivergent intersubjectivity, the process through which autistic people build shared understanding in their own non-normative ways. The contribution of Study 2 is to identify two forms of neurodivergent intersubjectivity which enable shared understanding to be achieved, but which have traditionally been viewed as undesirable from a normative social viewpoint: a generous assumption of common ground that, when understood, lead to rapid rapport, and, when not understood, resulted in potentially disruptive utterances; and a low demand for coordination that ameliorated many challenges associated with disruptive turns. Study 3 examines interactions involving lay people (n=256) who believe they are interacting with an autistic partner through an online collaborative game, when in fact they are playing with an intelligent virtual agent (IVA) who behaves the same way for all participants. Its contribution is methodological as it develops a new application for simulating interactions in experimental research called Dyad3D. Study 3 uses Dyad3D to explore how disclosure of an autism diagnosis by the IVA affects social perception and social behaviour in comparison to a disclosure of dyslexia and a condition where there is no diagnostic disclosure. Combined with a post-game questionnaire, Study 3 triangulates self-reported (quantitative rating scales and qualitative explanation) and behavioural measures (quantitative scores of actions within the game) to understand the interplay of positive and negative discrimination elicited through using the label of autism. It highlights that diagnostic disclosure of autism leads to significant positive bias in social perception when compared to a disclosure of dyslexia or a no disclosure condition; yet participants are not as helpful towards the autistic IVA as they think they are, indicating a potential bias in helping behaviour. The thesis takes an abductive methodological approach which integrates with a wider call for a more participatory model of research in the study of autism. Abduction is a form of reasoning which involves the iterative development of a hypothesis that holds the best explanatory scope for the underlying phenomena observed. It is inherently aligned with a participatory model of research because abduction involves the ongoing exploration of ideas that may originate from multiple sources (i.e. interactions with autistic people as well as research outputs). Taking a more holistic approach to the development of knowledge with autistic people which recognises the legitimacy of different claims to knowledge is important, because prior research in the field has often failed to critically reflect on researcherparticipant positionality and the principals underlying the development of research agenda. For this reason, the thesis details the participatory activities which surround and interconnect with the development of the three empirical studies. Overall the thesis contributes to understanding autistic sociality as a dynamic, interactionally shaped process. It reasons that autistic people have unrealised social potential, both in terms of imagining other perspectives (Study 1) and coordinating with others (Study 2). However, such social potential may not be easily recognised by other non-autistic people who may be biased in their assumptions about autism (Study 1 and Study 3). Consequently, the evidence presented in this thesis helps to explain some of the processes that underscore the double empathy problems reported in literature, including poor mental health (because autistic people are aware that they are misunderstood by others, see Study 1), employment prospects (because autistic social potential is under-recognised by others, see Study 1 and 3), and quality of life (because neurotypical standards of communication are not compatible with neurodivergent forms of intersubjectivity, see Study 2). The thesis therefore makes suggestions for how we design enabling environments which are sensitive to the dynamic factors that can enable autistic sociality to flourish.
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It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.
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This paper discusses various approaches to the phenomenon of disability in relation to special needs. Ever since disability researchers launched the social model of disability and criticised the field of special education for preserving an understanding of disability in accord with a medical model, the special education field has been in a state of crisis. The implication of this has been the embarrassment of talking about categories and levels of functional difficulty; as well as diagnoses, all of which enable individual assessments necessary for building the IEPs (Individual Educational Plans) and child‐centred teaching within special needs education. The challenge for special needs theorists is to consider the critique of the orthodoxy of special needs education and its understanding of disability, yet at the same time to develop an understanding of disability that can serve as a departure point for working in the field of special needs education. This implies an understanding of the phenomenon of disability, identifying pupils’ needs without contributing to the negative effects that often have come about in the wake of classification, categorisation and labelling in education. The present paper argues for a social relational model of disability as a platform for the enterprise of special needs education. The rationale for the social relational model of disability is that it better conforms to the morality of inclusion because the main issue of the social model, oppression, is not obliterated.
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The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom's pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people's day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.
The American Psychological Association (APA) advocates the use of person-first language (e.g., people with disabilities) to refer to individuals with disabilities in daily discourse and to reduce bias in psychological writing. Disability culture advocates and disability studies scholars have challenged the rationale for and implications of exclusive person-first language use, promoting use of identity-first language (e.g., disabled people). We argue that psychologists should adopt identity-first language alongside person-first constructions to address the concerns of disability groups while promoting human dignity and maintaining scientific and professional rigor. We review the evolution of disability language and then discuss the major models used to characterize disability and people with disabilities. The rationale for person-first language and the emergence of identity-first language, respectively, are linked to particular models. We then discuss some language challenges posed by identity-first language and the current intent of person-first language, suggesting that psychologists make judicious use of the former when it is possible to do so. We conclude by offering five observations of ways that use of both person-first and identity-first language could enhance psychologists' cultural competence regarding disability issues in personal and scientific communications. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
This paper reviews theory and research on disability and gender from a UK perspective. It reflects upon the theoretical perspectives and debates that are to be found in UK disability studies today, and considers their relevance for research on the gendered nature of disability. Themes in empirical research are noted, as is the representation and treatment of disability in mainstream feminism(s). The paper warns about the danger of exclusion through nominal inclusion.
This paper considers sociological understandings of what constitutes disability. Current meanings of disability in both disability studies and medical sociology are examined and compared, using selected articles from leading authors in each discipline as case studies. These disciplines are often represented as offering starkly contrasting approaches to disability, with their differences amount-ing to a disciplinary 'divide'. It is argued that, on closer inspection, common ground can be found between some writers in disability studies and medical sociology. It is suggested that this situation has arisen because, in disability studies, the social relational understanding of disability developed by Vic Finkelstein and Paul Hunt in the 1970s has been lost over time, overshadowed by the rise to prominence of its offspring: the social model of disability. The paper concludes with some reflections on the need to revive a social relational understanding of disability.
Understanding this thing called autism
  • K Runswick-Cole
Besieged by behavior analysis for autism spectrum disorder: A treatise for comprehensive educational approaches
  • E Shyman