autism thesis

Autism and Social Interaction: A Discursive Psychological Study

In psychological research, autistic people are generally characterised as possessing disordered social cognition and embodiment in comparison to non-autistic people.

Specifically, a deficit in Theory of Mind (the capacity to think about other people’s mental states in order to understand and predict their behaviour) and altered tactile sensation have been proposed as some significant psychological differences present in autism. Autistic people are characterised as experiencing social interactional difficulties that impact social-emotional reciprocity. Examples of such impact include struggling to approach others to interact or to make personal or relevant contributions to an interaction.

While there is a substantial literature on the cognitive properties of autistic individuals compared to non-autistic individuals and how these impact social psychological phenomena, there is considerably less research that analyses autistic people in their own right as social agents in naturally-occurring, everyday settings. As well, there is a challenge to the ideology behind deficit-oriented frameworks of autism in the form of the neurodiversity movement. This thesis draws on ethnomethodology, discursive psychology, and conversation analysis to contribute to both the naturalistic study of autistic people in social interaction and the development of positive, competence-oriented, and ecological approaches to autism. This will be achieved by analysing the social action, as produced in talk and with the body, of autistic children in interaction with their family members in their homes.

Ten hours of video recordings were collected in the homes of four volunteer families with at least one autistic child member. Recordings were made by the families themselves of the mundane domestic activities they engaged in, including episodes of cooking and mealtimes, members playing together, preparing for school, and discussing the day’s activities. After detailed transcription, instances of the children providing accounts for their own behaviour and embraces (or resistance to them) were collected for and became the focus of detailed analysis. An extended sequence constituting a common parenting activity (directing a child to do something) was also selected. This research takes the domains of Theory of Mind and tactile sensation that are prominent within psychological research on autism and treats them as social interactional accomplishments.

The first empirical chapter examines how children accounted for their own behaviour.

It found that the children’s accounts were oriented toward the displayed expectancies and characterisations of the child and their conduct either in responding to first pair parts (e.g., resisting suggestions with an embedded presumption of the child’s knowledge), or in launching their own first action (e.g., requesting more food). These accounts constitute concern for how the children’s interactants could, or do, treat them in response to their behaviour, accomplishing Theory of Mind embedded in their everyday action.

With respect to tactile sensation, the second empirical chapter analyses embraces.

Embraces occurred within and between a variety of other activities. Analyses showed how both children and parents initiated embraces and many were accomplished as non-problematic by the children. Participants arranged their bodies such that the embrace was coordinated with the talk and ongoing action, and utilised both verbal and embodied resources to initiate and terminate. Children prioritised their ongoing actions, treating some embraces or embrace initiations as interruptive by avoiding, escaping or otherwise misaligning with them.

The third empirical chapter demonstrates how one family’s extended sequence of action directing their child to use the bathroom before bedtime was comprised of a variety of different relational activities. In the process of managing the larger project of the directive, parent and child negotiated complex elements of their relationship including issues of power and responsibility, shared knowledge and experiences, and expectations of group membership.

This thesis offers a critical perspective on the conceptualisation of autism in psychology. It grounds this alternative view of autism based on an empirical analysis of how the autistic children and their family members in the interactions analysed manage complex social psychological matters in the production of their social action. It expands upon discursive psychological research on the accomplishment of social cognition as action produced within talk-in-interaction. It also exemplifies a direction a neurodiversity-sensitive psychology of social action could take and identifies ways that this can be further developed.

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Walden Dissertations and Doctoral Studies

The experience of parents of children with autism participating in aba treatment.

Monica LaBrie , Walden University Follow

Date of Conferral

Arcella Trimble

Having a child with autism results in a unique set of challenges for both parents and siblings. Applied behavior analysis (ABA) has significant empirical support demonstrating its effectiveness as a treatment for children with autism. However, effective behavioral interventions should also consider how the family is affected. The purpose of this phenomenological study was to explore the lived experiences of 8 parents of children with autism who have received ABA treatment and their perceptions of how the family system is impacted by ABA outcomes, specifically focusing on parental well-being and sibling relationship quality. A family systems theoretical framework and phenomenological research method were used. Data were analyzed using content analysis to find the common themes that emerged, which were: parents of children with autism face a high level of stress, but ABA treatment results in a decrease of some sources of stress. Having a child with autism produces strains in family relationships; however, ABA treatment outcomes can help with improved communication between spouses and interactions between siblings. Parents acknowledge challenges associated with ABA treatment but believe that the benefits are worth it. Insights gained from this study were meaningful and practical for professionals who provide ABA treatment to children with autism, as well as for parents of children with autism who may be interested in seeking ABA treatment. Positive social change resulted from the identification of perceived benefits of ABA treatment, such as reduced parental stress and improved relationships amongst all members of the family.

Recommended Citation

LaBrie, Monica, "The Experience of Parents of Children with Autism Participating in ABA Treatment" (2019). Walden Dissertations and Doctoral Studies . 7105. https://scholarworks.waldenu.edu/dissertations/7105

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HYPOTHESIS AND THEORY article

Going beyond the catch-22 of autism diagnosis and research. the moral implications of (not) asking “what is autism”.

• 1 NeuroEpigenEthics, Department of Philosophy, University of Antwerp, Antwerp, Belgium
• 2 Brain and Cognition Unit, Department of Psychology, Katholieke Universiteit Leuven, Leuven, Belgium
• 3 Leuven Autism Research Unit, Department of Health Sciences, Katholieke Universiteit Leuven, Leuven, Belgium
• 4 Centre for Logic and Philosophy of Science, Higher Institute of Philosophy, Katholieke Universiteit Leuven, Leuven, Belgium

Psychiatric diagnoses such as Autism Spectrum Disorder (ASD) are primarily attributed on the basis of behavioral criteria. The aim of most of the biomedical research on ASD is to uncover the underlying mechanisms that lead to or even cause pathological behavior. However, in the philosophical and sociological literature, it has been suggested that autism is also to some extent a ‘social construct’ that cannot merely be reduced to its biological explanation. We show that a one-sided adherence to either a biological or a social explanation leads to a moral dilemma, a Catch-22, for autistics and for those living with them. Such explanations close the space for self-identifying as autistic and at the same time being considered to be in good mental health. They foreclose the possibility of making sense of the lived experience of (and with) autistics. In this paper we argue that such lack of space for moral imagination inherently leads to scientific stalemate. We propose that one can only go beyond this stalemate by taking an ethical stance in theorizing, one that enables better intersubjective understanding. Only on such a view can behavior and biology be linked without either disconnecting them or reducing the one to the other.

Introduction

“Orr would be crazy to fly more missions and sane if he didn’t, but if he was sane, he had to fly them. If he flew them, he was crazy and didn’t have to; but if he didn’t want to, he was sane and had to.” Joseph Heller, Catch 22 ( Heller, 1961 ).

Discussions about autism 1 are caught up in simultaneous stalemates. On the one hand, there is the ethical stalemate between considering autism as a disorder or claiming it as a positive identity ( Mole, 2017 ). On the other hand, there is the ontological stalemate between concepts of autism as a pure social construct or as having an immutable essence. Does autism allow for unification under, for instance, one (or more) biological explanations, or is it just a useful clinical category expressing that certain behaviors are deemed problematic in current societal circumstances? A key question in the latter stalemate is whether or not it makes sense at all to try to answer the question: ‘What is autism?’ ( Hacking, 1999 ). In this paper, we demonstrate that the ethical and ontological stalemates are connected, by analyzing the moral implications of (not) inquiring into the essence of autism. A theoretical choice, whether it tries to answer the ‘What is?’ question or considers it unanswerable, always has moral implications. We show that to resolve the ethical stalemate, we must start from and incorporate the experiences of actual autistics. This puts constraints on the theoretical approaches that can be fruitfully investigated, as they are not all equally open to incorporating these experiences. We, therefore, propose that to move beyond a Catch-22 inherent in current diagnostic and research conceptualizations, we are to reconceptualize autism to offer room to imagine autistic people as moral agents who are not fully determined by their autism, in other words as an intrinsically ambivalent social-biological phenomenon . Any fruitful theoretical approach to autism will be at the same time ethically sound and truly interdisciplinary. We recognize that much recent autism research is already moving in this direction, de facto integrating autistic lived experiences and insights of both the social and exact sciences. This paper can be seen as providing an explicit philosophical underpinning of this trend in identifying how the current diagnostic conceptualization of autism forms a remaining barrier to it. We come back to this toward the end of the paper after first treating in detail the more entrenched views regarding the question ‘What is autism?’.

The neurodiversity movement, which claims that autism can be a positive practical identity, is an attempt to steer clear of pathologizing autism. An intuition at the center of the neurodiversity movement is that neurological diversity is a fact that should not be identified with psychiatric problems. It is unfair to treat the neurodiversity movement as a monolith. Milton (2017) and Chapman (2020) , focus on autism from a social perspective. They put the emphasis on the idea that aspects that make life challenging for autistics are not intrinsically linked to individual flaws, but to a mismatch between the individual and the environment, and a lack of support. Jaarsma and Welin (2012) while following this reasoning focus more on autism being a neutral neurological or genetic variant in so-called cases of ‘high functioning autism’ (HFA). For them, however, autism if combined with intellectual disabilities, or ‘low functioning autism’ (LFA), can be seen as inherently disordered. But this opens up the question of which lived experience counts as genuinely autistic 2 . Why would having an IQ above a certain threshold make the difference in being allowed to positively identify as autistic? Still, if the autistic voice is not to be split in this way, an account must be given about how the everyday problems that autistic individuals may experience are related to a common underlying aspect of the autistic lived experience. As Chapman (2020) argues, the challenge is to resist abandoning the over-arching concept of autism in view of “problematic findings relating to the biological underpinnings of autism,” on the latter see Happé et al. (2006) and Waterhouse and Gillberg (2014) .

As the neurodiversity movement shows, it is intuitively attractive to see autism in a way that combines elements of both essentialist and constructivist approaches. However, this then begs the question of how, if at all, they can be combined in a scientifically fruitful way 3 .

While we do not attempt to answer the latter question here, it is clear that the researchers investigating autism meanwhile need to proceed with a working definition of autism. At this time, that definition is given in the DSM-5 ( American Psychiatric Association, 2013 ) entry on Autism Spectrum Disorder (ASD). In this definition, two main behavioral criteria (clauses A/B) are coupled with (what is broadly construed as) an innate developmental disorder (clause C) and with problematic functioning (clause D) 4 . This working definition is compatible with pure essentialist and social constructivist theories but, as we will argue, conflicts with the dimension of the lived experience of the autistic person. Indeed, the conceptualization of autism per ASD in DSM-5 inevitably puts the autistic person in a Catch-22 situation. They might indeed think: “I’d be disordered if I accept to be autistic, but if I’m in good mental health I have to accept I’m not autistic.” The fact that this dilemma poses real problems for autistics is specifically evident in cases of ‘late diagnosis,’ see for instance self-reporting in Experiences of Adults Following an Autism Diagnosis ( Hens and Langenberg, 2018 ). Either autistics try to adapt, only to ultimately succumb under the pressure of their coping and compensation strategies, or they accept to self-identify with autism but will then have to face the stigma and stereotype associated with a psychiatric diagnosis referring to persistent dysfunctionality. Here, before developing our argument, it is crucial to acknowledge that seeing autism only in a light of dysfunction is luckily something that is being replaced by seeing it more and more as a locus of potential strengths. This evolution, in large part enabled by the neurodiversity movement, is the reason behind the mentioned drive for positively self-identifying as autistic. It is, however, still a painstakingly slow process 5 . This paper needs to be seen in the context of removing one of the main elements of this slowness, namely the one-on-one association between autism and disorder or dysfunction. Our focus on the latter should not be taken as a denial of the positive potential of autism as this potential is, in fact, one of the key motivations of our argument.

With these introductory elements in place, we can detail the plan of our argument below. In a first section, we will argue that the fundamental use of the term ‘autism’ is moral and related to the understanding of autistic lived experience instead of a mere ‘neutral’ explanation of autistic difference. We do this based on the work in philosophy of science on social constructivism by Ian Hacking and one of his key sources of inspiration, Nelson Goodman. In this way we show that any theoretical explanation needs to meet the constraint of going beyond the Catch-22 articulated above. The next section will explore in detail this constraint in the light of additional elements connecting philosophical psychology as it is understood by Donald Davidson with the moral philosophy of Nomy Arpaly. In applying these elements to various essentialist and constructivist frameworks, we will contend that a reconceptualization of autism that is at odds with the current DSM-5 consensus is required to fruitfully make sense of autism (combining theoretical and ethical elements). The final section before the conclusion tentatively explores such a ‘theorethical’ approach based on recent insights from Bolis et al. (2017) and the Predictive Coding theory of Van de Cruys et al. (2014) . We show how this conceptual space allows to express how behavior and biology are linked without either disconnecting them or reducing one to the other. Finally, in conclusion, we describe how our reconceptualization allows making good on the claims of the neurodiversity movement, without running into new moral issues and, at the same time, to create intrinsic openness to fruitful, and inherently interdisciplinary, scientific progress.

The Fundamental Moral Uses of ‘Autism’

We start from the idea that there is no neutral use of ‘autism’ isolated from its moral use (making sense of the autistic lived experience). As such, the use of ‘autism’ (whether it’s scientific, philosophical, historical, sociological, normative, or clinical) disregarding such a fundamentally moral use can only lead to abuse. To support this claim, we first dwell on the various uses of ‘autism’ and distinguish them from what we claim to be this fundamentally moral use.

To do this we will not be historically exhaustive - the critical histories of the use of ‘autism’ inspiring our point are Eyal (2013) and Nadesan (2013) . Instead, we highlight how the initial drive to describe prototypes [for instance clearly evident 6 in Asperger (1944) ] turned into the practice of classifying behavior as assessed in a diagnostic setting. The direction of fit , i.e., whether an autistic type is made to fit the people or whether the people are made to fit the type is, in our opinion, the basic difference between moral and other uses of ‘autism.’ Indeed, in describing autistic people, the autistic type is made to fit the people whereas in classifying people as autistic, a person is made to fit preconceived types. As Asperger himself noted:

“This way, going from the expressive appearances to the core of the phenomenon consciously does without starting from a pre-given system (….) therefore, we also consciously refrain from bringing them into artificially created test situations or make them fit a stereotypical test machinery (….)” ( Asperger, 1944 , p. 7, own translation).

What Asperger tried to do has a (self-acknowledged) artistic element in it, working through a process that Goodman (1978) calls exemplification , where knowledge of something is gained by looking at an example instantiating that something. In Goodman’s own words:

“Exemplification, though one of the most frequent and important functions of works of art, is the least noticed and understood. (…) exemplification involves reference by what possesses to the property possessed.” ( Goodman, 1978 , p. 32).

The question originally was how autistic people can be better understood as a whole, “in a dialogical relation between doctor and patient” ( Ripamonti, 2016 ). This understanding is modeled on how we understand a work of art rather than on how we explain the working of a machine. As such, exemplification describes autistics as prototypically socially awkward while explanation requires that one stereotypically ascribes antisocial tendencies to every autistic person (i.e., classifies them as antisocial). We can summarize this by referring to the traditional philosophical categories of Erklären and Verstehen (as first laid down by Wilhelm Dilthey and later applied to psychiatric practice by Karl Jaspers). Table 1 provides a schematic overview of the terms used above:

Table 1. Two poles in using ‘autism.’

It is not our contention that the exemplifying, prototypical, use of autism is the only morally valid one, and that systematic, explanatory use based on clear empirical classification is to be avoided. The dynamic between these two poles is as inevitable as it is healthy. This is, for instance, clear from autistic self-reports taking explanatory accounts as a crucial element in their self-understanding ( Hens and Langenberg, 2018 ). The problem only emerges when the dynamic is disturbed. On the one hand, this happens in autism research where ‘neutral’ explanation predominates, stripping the study object of any subjectivity, considering autistics as either biologically or socially determined to display problematic behavior. For instance, one can think of the use of animal models such as the autistic mouse or fruit fly, where behavior is merely seen as the result of a ‘gene deficit.’ On the other hand, this happens when clinical understanding of specific problematic cases is separated from explanation of the underlying differences autistics have in common. This approach can for instance not do justice to the common lived experience of sensory sensitivity reported across the autistic spectrum ( Pellicano, 2013 ). One worthwhile alternative proposed is to abandon the search for one single biological explanation for the whole autistic category and instead look for specific explanations of specific elements of the over-all autistic phenotype ( Happé et al., 2006 ; Waterhouse and Gillberg, 2014 ). While this recognizes autistic heterogeneity, it risks sacrificing understanding the commonality of autistic lived experiences in favor of multiple, disconnected, explanations 7 ( Chapman, 2020 ).

The notion of ‘autism’ naturally getting caught up in a one-sided explanatory focus is understandable, since it emerges from a medical context. As such it has been, from its very beginning, associated with problematic behavior for which a medical, therapeutic solution is sought. As stated by Ripamonti (2016) , the psychiatric use of autism was instigated by Leo Kanner creating a new field of child psychiatry “to identify a narrow empirical set of criteria for medical observation and diagnosis”. In this way the ‘neutral’ explanatory question “What is autism?” ( Eyal, 2013 ) came to dominate.

The aim of autism research in addressing this question is to uncover the mechanisms that lead to (what is deemed to be) pathological behavior. This naturally led to two competing strands of scientific explanation, depending on whether the question was interpreted within the exact sciences (looking for biological causes, the ‘reality’ behind autism) or the human sciences (looking for psychosocial factors explaining how dysfunctional autistic behavior comes about). In our view, both are morally problematic, sidestepping the primordiality of understanding the autistic lived experience by giving precedence to explanatory elements. This moral problem came to the fore when the complexity of autistic self-advocacy challenged the simple stereotypes which are the underlying assumptions of such research. For instance, Eyal (2013) describes how in the nineties self-advocacy challenged many of these stereotypes. In both cases understanding autism passes through explaining (elements of) dysfunctionality which, in line with the Catch-22, prevents autistic identification without acknowledging mental health issues and, therefore also, blocks identifying as autistic in order to prevent such mental health issues.

The new question is whether it is fruitful to try to ask the question ‘What is autism?’ in the first place. Philosopher of science Ian Hacking (1999) indeed treats autism as a paradigm example of the debate between reality and social construction, drawing his famous distinction between indifferent and interactive kinds. In the section entitled “A Dilemma” he says:

“Here (in case of autism) we want to say both that childhood autism is (is identical to) a certain biological pathology P, and so is a “natural” kind or an indifferent kind. At the same time, we want to say childhood autism is an interactive kind, interacting with autistic children, evolving and changing as the children change 8 .” ( Hacking, 1999 , p. 119).

The solution as proposed by Hacking is to look beyond semantics. Instead, he proposes to look into the dynamic of worldmaking ( Goodman, 1978 ), which states that worlds are made by the language we use and that we interpret the facts within these man-made – or constructed – worlds. Hacking’s concept of dynamic nominalism , in acknowledging that there is such an effect of language dynamically shaping reference, sidesteps the question whether (and, if so, in how far) the question “What is autism?’ allows an answer. As insightful as his analysis is (we will rely on it in section “The Looping Effect and the Attractivity of Stereotypes” below), we believe that in leaving the question open, he exacerbates his own dilemma. Indeed, the new use of autism as an illustration of a dichotomy within philosophy (of science) disregards actual autistic lived experience which, as mentioned above and as evident from the term ‘neurodiversity,’ seeks to combine an understanding of autism with an explanation of a common underlying difference. A pure social constructionist approach to autism emphasizes the link between autism and pathology, underlining our Catch-22 and denying the growing sense in the neurodiversity movement that autistics can be different without being pathological ( Milton, 2017 ; Chapman, 2020 ).

Notwithstanding all this discussion, autism researchers need a working definition of autism. That definition is provided by the consensus criteria of Autism Spectrum Disorder (ASD) as spelled out in the DSM-5 ( American Psychiatric Association, 2013 ). This consensus is a product of scientific and societal pressures ( Eyal, 2013 ). It sidesteps the “What is autism?” debate, by a coupling of behavioral definitions (clauses A, B) to (what is broadly construed as) an innate developmental disorder (see clause C), as well as to problematic functioning (clause D). This means that autism is literally defined as autism spectrum disorder , implying autistic people are automatically disordered. As such, it is conceptually anchored as a pathology that can only be diagnosed if there is a manifest problem in functioning (in which case it will be both retro- and proactively understood as problematic). Although, as said above, this DSM-5 conceptualization is already challenged in autism research [ Waterhouse and Gillberg (2014) ; Bolis et al. (2017) to name just two], such challenges have not yet led to a reconceptualization of the diagnostic practice affecting the everyday lifeworld of autistics and the practical aspects of autism research, for instance in ‘eligibility’ as autistic research participant. We come back to how our proposal constructively links to those challenges in Section “A ‘Theorethical’ View of Autism” below.

The DSM-5 conceptualization then directly leads to the Catch-22 defined in the introduction, as self-identifying as autistic entails being (literally) pathological, thereby leaving no room for understanding or making sense of non-pathological autistic lived experience 9 . That experience is complex. It includes both elements suggesting a common biological basis (as for instance in sensory sensitivity) and elements suggesting a mere mismatch with social norms (for instance a one-sided preference for typical behavior). Also, it is experienced as something that offers opportunities but can also cause suffering. As such, it cannot be captured by the current DSM-5 conceptualization. In the next section, we will demonstrate how the moral use of autism – going beyond this Catch-22 of autism diagnosis and research – both creates space for and puts constraints on theorizing.

Pattern of (AB)Using ‘Autism’

In the previous section, we established that doing justice to the lived experience of autistics requires taking an ethical stance that is at odds with the current DSM-5 conceptualization of autism as necessarily pathological. The question now is to explore what kinds of constraints on theorizing follow from such an ethical stance. For this, we propose a pattern of five dimensions, created by four philosophers, which we apply to a strictly motivated classification of some illustrative autism theories 10 . It connects an ethical stalemate with a scientific stalemate through a lack of space for moral imagination and leads to a principled proposal for reconceptualizing autism to go beyond the Catch-22.

In brief, in the first element of the pattern we use Nelson Goodman’s concept of “Ways of Worldmaking” (1978) to demonstrate that the question “What is autism?” is indeed inherently world-making. Secondly, we briefly describe how unifying theories of mental phenomena, in general, are implicitly dedicated to a deep theory about brain-mind duality or identity, and as such run counter to the philosophical considerations that have been reviewed by Davidson (1970/2001) . Thirdly, we demonstrate that in autism, such unifying theories create what Eyal (2013) has called “The Autism Matrix,” consolidating their social, individual and media appeal in line with the looping effect as described by Hacking (1999) . In the fourth element, we demonstrate that the reductive attractiveness of these deep theoretical models reduces the space for moral imagination as described by Arpaly (2005) . And finally, we demonstrate that the insistence on a deep theoretical model creates the fiction of a conceptual scheme, the “very idea of autism,” which, as Davidson (1974/2001) described for conceptual schemes in general, is unsustainable.

The pattern shows that theoretical progress is linked to a charitable everyday mutual understanding of autistic lived experience in line with the fundamental moral use of autism proposed above. With a nod to Hacking’s “looping effect of human kinds,” we call this link “the binding effect of humankind.”

To organize this section, we divide our selected illustrative autism theories in two main types. On the one hand, there are the brain (or cognitive) science theories using the methods of the exact sciences in focusing on a biological mechanism underlying autism. On the other hand, the theories that focus on the behavioral side of autism, using the methods of the human sciences to account for the emergence of (the classification of) such behavior. First, the pattern is explained in detail whilst applying it to a set of cognitive science theories. Then we apply the pattern to a selection of views on autism in the social sciences. Based on this, we conclude in Section “Reconceptualizing Autism” that avoiding moral dilemma requires reconceptualizing autism as an intrinsically ambivalent phenomenon , with both biological and behavioral views. Only in this conceptual space can it be expressed that behavior and nature are linked without either disconnecting them or reducing one to the other.

Autism in the Brain Sciences

Table 2 contains a list of the cognitive science papers used in this review.

Table 2. Theories of autism in cognitive science.

This selection is not exhaustive but offers an illustrative list of cognitive science theories that have dominated debate in the scientific and autistic communities. The first three theories (ToM, EF, and WCC) are considered as somewhat outdated by many autism researchers but are still very relevant here as they are firmly established in current diagnostic practice. The latter three (EPF, IWT, and HIPPEA) have been widely discussed in the scientific literature and the autistic community as alternatives to the established theories. Note that the last column of the table classifies these theories as either ‘Cognition first’ or ‘Perception first’; this classification is explained in the next session when we apply our pattern to these papers.

The Fabrication of Facts

Goodman phrases it as follows in the section of his book on worldmaking with the same title:

“My title, “The Fabrication of Facts,” has the virtue not only of indicating pretty clearly what I am going to discuss but also of irritating those fundamentalists who know very well that facts are found not made, that facts constitute the one and only real world, and that knowledge consists of believing the facts. These articles of faith so firmly possess most of us that, they so bind and blind us that, “fabrication of fact” has a paradoxical sound. “Fabrication” has become a synonym for “falsehood” or “fiction” as contrasted with “truth” or “fact.” Of course, we must distinguish falsehood and fiction from truth and fact; but we cannot, I am sure, do it on the ground that fiction is fabricated and fact found.” ( Goodman, 1978 , p. 91).

As a starting point in our pattern, I follow Goodman in taking a closer look at the facts that are supposedly neutrally ‘found’ in cognitive science research. The fact that this is not evidently so is already clear from the review in Van de Cruys et al. (2014) classifying autism theories in two groups: “social first” and “non-social,” based on what is considered as a primary cause (see column 4 of Table 2 ). Autism research is therefore aware of the risk of bias in restricting the reference class of autistic people to those exhibiting the behavioral elements highlighted in DSM-5 ( American Psychiatric Association, 2013 , clauses A/B) to a problematic (dysfunctional) level (ibid, clause D). In terms of Goodman (1978) , this risk is one of “ordering, weighing, supplementing and deforming” how we are making a world. In Table 2 , this tension is evident from the elements in column 4, showing the autistic phenotype as, potentially at least, characterized by heterogeneity of possible primary causal factors.

We have chosen for a different classification in Table 2 last column indicated by the labels ‘Cognition first’ and ‘Perception first.’ This classification subdivides our illustrative set of theories based on the direction of explanation they take. The ‘Cognition first’ theories start from behavioral facts at a higher social or cognitive level (ToM, EF, and WCC), while the ‘Perception first’ theories (IWT, EPF, and HIPPEA) start from a variety of lower-level mechanisms. This shows that there is at least a choice in worldmaking (what is deemed essential in denoting autism) and that this choice is non-neutral 11 . It is non-neutral since this level of classification already makes a clear difference with respect to what are deemed ‘core symptoms’ and what is termed ‘comorbidities.’ Do I avert my eyes because I have difficulty reading the other’s mind (ToM) or because I see the other too vividly (IWT)? What we want to show briefly below is that the element of exemplification played a decisive role in the shift from ‘Cognition first’ to ‘Perception first’ theories over the last decade.

The very first brain sciences theory of autism (ToM) assumes the brain is modular and autism affects one of its modules: i.e., the social one ( McGeer, 2004 ; McGuire and Michalko, 2011 ). Assuming a one-on-one correspondence between social behavior (or lack thereof) and a piece of machinery in the brain provides an immediate fit to the ‘asocial facts.’ The WCC and EF theories abandon this social-first approach but remain ‘Cognition first’ in assuming that there is a higher (typically human) cognitive faculty that is compromised in autism. The importance of this worldmaking cannot be underestimated (see also section “The Looping Effect and the Attractivity of Stereotypes” below about looping effects): they are entrenched in a matrix of worldwide diagnostic and therapeutic practices as well as in (early) autistic self-identification ( Eyal, 2013 ). A world is made in which the autism label ties abnormal behavior to a brain deficit in a higher cognitive function 12 . The search for a unified ‘Cognition first’ explanation of autism was unsuccessful by its own lights. As Happé et al. (2006) noted the heterogeneity of autism could not be unified in this way. A suggestion was then made by Waterhouse and Gillberg (2014) to abandon the search for unified accounts in favor of looking for more ‘downstream’ explanatory accounts of multiple autism s .

The reason why the case does not end there, in cognitive science research, is directly related to the element of exemplification mentioned above. Indeed, prototypical reports of autistic lived experience in the form of autobiographical reports and phenomenological research [see Hens and Langenberg (2018) for both a review and an example] suggested a new research angle. The heterogeneity of the autistic phenotype at the cognitive level could be an emergent effect of the commonalities in autistic self-reports related to how the external world is perceived. Different theories are proposed under this ‘Perception first’ paradigm of which Table 2 highlights three, each focusing on a different primary perceptual element. The first (EPF) hypothesizes autism is characterized by a preference for perception of details. It focuses on a subset of autistics with ‘savant’ abilities. The second (IWT), inspired by their direct experience with their child, found support in artificial reconstruction of animal models and noting that different wiring of sensory systems had significant ‘upstream’ impacts. The last (HIPPEA) is the most recent in our list and focuses on atypical information processing leading to atypical handling of uncertainty indirectly leading to the emergence of the behavioral criteria of DSM-5 (see section “A ‘Theorethical’ View of Autism” for more detail). These theories give priority to the persistent self-reporting of perceptual elements by autistics instead of mapping the behavioral criteria to cognitive deficits. We do not want to argue that this makes them immediately correct 13 but only suggest at this time how profound the influence from exemplification is with respect to world-making. In this case it even led to incorporating sensory sensitivity in the DSM-5 criteria ( Pellicano, 2013 ).

With Goodman (1978 , p. 22), we can note that at least within the biological view of autism “Comprehension and creation go on together.” The movement in recent brain science research seems to forego a direct link between abnormal behavior and brain deficits, preferring to make room for a more mundane set of facts focused on the everyday experience of and with autistics. Moving away from stereotypes and back to considering prototypes is, as we argued in section 1, essential to remain open to the complexity of the autistic lived experience 14 . In our view, it is not a coincidence that there is a move toward a notion of spectrum in DSM-5 because: “Ratings of relevance, importance, utility, value often yield hierarchies rather than dichotomies.” ( Goodman, 1978 , p. 10). We see the criticism noted above with respect to finding one monolithic cognitive issue to account for the heterogeneity of autism as, essentially, in the same direction. However, as already mentioned, we believe it is important to still do justice to the commonality of the autistic lived experience (see section “A ‘Theorethical’ View of Autism” for a possible convergence).

Comprehensive Psychological Theories

In “Mental Events” ( Davidson, 1970/2001 ), Davidson argues for a principled restriction on psychological theories, labeling his position as that of Anomalous Monism . He argues that on the one hand mental events have a physical counterpart ( monism ) but that this does not mean that there can be such a thing as psychophysical laws ( anomalousness of the mental ). He dissociates his position from three alternatives, one of which (nomological monism) is the subject of this subsection (the other two positions are discussed in section “Autism in the Behavioral Sciences”). He associates the strict monist position to “the nothing-but reflex” (p. 214) stating that any mental event is “nothing but” a complex neural event (see also section “The Moral Space Afforded by Theories”).

The ‘Cognitive first’ theories, tying behavior directly to the physical outlook of the brain, are specific examples of “comprehensive closed theories” (p. 219) of cognition. Indeed, all of these theories in autism are derived from a comprehensive theory in the philosophy of mind: modularity ( Fodor, 1983 ), leading to the pervasive metaphor of the brain as a computer ( Nadesan, 2013 ) and combining this with evolutionary psychology into a Grand Unifying Theory ( Cosmides and Tooby, 2015 ). The inescapable logic of this is to look for the missing link – a compromised module – and fix or cure that 15 . It seems that tying behavior directly to a neurological substrate naturally limits the room for moral imagination (see for more detail section “The Moral Space Afforded by Theories”).

The ‘Perception first’ theories are rather superficial in describing how specific neurological issues may account for the diversity of facts related to, specifically, autism. In this sense they do not suggest strict psychophysical laws relating behavior to the way brains are made up. Instead they use notions like “scaffolding” (HIPPEA) correlating behavior and brain function in a looser, statistical, way. Where ‘Cognition first’ theories talk about deficits or abnormalities determining behavior, ‘Perception first’ theories talk about atypicalities affecting behavior. We believe that this is precisely the room between the mental and the physical that Davidson argues for.

It is important to note, in conclusion of this subsection, that all the theories in Table 2 are – in the end – monistic; they try to interpret behavior based on physical elements. They are, in the terminology of ( Hacking, 1999 ), all committed to autism at least also having the character of an “indifferent kind,” i.e., a kind existing independently of the looping effect discussed in the next section.

The Looping Effect and the Attractivity of Stereotypes

We referred above, in Section “The Fabrication of Facts,” to inescapable world-making in addressing questions like ‘What is autism?’. The follow-up question addressed in ( Hacking, 1999 ) is how worlds so made become firmly established. This is where Hacking’s “looping effect” states that success of interactive kinds depends on how they catch on; we refer to ( Eyal, 2013 ; Navon and Eyal, 2016 ) for convincing illustrations of this effect.

The media obviously promote the attractivity of a hypothesis. It helps to have slogans (or memes) ready for mass consumption. In the case of the ‘Cognition first’ theories, there are quite a number of these making the rounds, such as mindblindness, hyper-systemizing and extreme masculinity [respectively, Baron-Cohen (1997 , 2002) , and Baron-Cohen et al. (2009) ]. The reason why such worlds achieve mass success (and thereby power the looping effect) is that they appeal to simple stereotypes. On the one hand, they allow creating stories that have an emotional appeal ( Draaisma, 2009 ). On the other hand they link to comprehensive scientific views of science, e.g., the comprehensive psychological theory of mind-as-a-computer ( Nadesan, 2013 ).

As Hacking notes ( Hacking, 1996 , p. 366), there are “several ways in which essentialist and constructionist attitudes are not only compatible but also mutually supporting.” As we have argued above, worthy adversaries of essentialist accounts in the mass media are constructionist accounts in which autism is “just a label” ( Timimi, 2018 ). These two extreme positions crowd out ‘Perception first’ theories as well as the prototypical self-reporting that often inspires them. As Hacking concludes (ibid., p. 387): “Human kinds are kinds that people want to be or not to be, not to attain some end but because the human kinds have intrinsic moral value.” Stereotypes exculpate at the group level, whether it is because ‘it is in one’s nature’ or because ‘the environment forces us to adjust.’ In both cases they leave individuals without moral agency 16 . ‘Perception first’ theories leave the moral complexity intact but arguably become less attractive from the point of view of the looping effect as they do not deterministically generalize into something that offers blanket exemptions.

The Moral Space Afforded by Theories

In the previous sections, we described how the analysis of Davidson and Hacking explained the emergence and appeal of the essentialist (and social constructivist) theories of autism. In line with this analysis, Nomy Arpaly – in her paper on mental disorders How it is not “just like diabetes” ( Arpaly, 2005 ) – explicitly connects the elements as touched upon above with morally problematic consequences for the people involved:

I do not wish to argue that mental disorders aren’t like diabetes at all. Many mental disorders have all kinds of things in common with many non-mental diseases. (…) Yet, there are some significant ways in which mental disorders are not “just like diabetes,” and are like other mental states. Ignoring this can be conceptually pernicious and ethically risky. ( Arpaly, 2005 , p. 282, our emphasis).

Indeed, moral considerations become specifically apparent in face-to-face confrontations with those to whom the psychiatric category applies. In dialog with autistic persons, it is impossible to dismiss them as ‘of another kind,’ tell them ‘it’s just a label’ (constructivist approach) or ‘it’s (not) just like diabetes.’ The analysis of ( Arpaly, 2005 ) explicitly tries to find a middle ground (inspired just like Davidson by the Kantian notion of a moral agent as an end in itself) allowing to take into account a physical aspect of a mental disorder without dehumanizing people by reducing their behavior to that mental disorder. She does this by saying that one always has to take into account the reasons for certain behavior, no matter how disordered they may appear at first glance. In the case of autism, this means there has to be sufficient space for moral imagination in accounting for individual reactions as a genuine expression of reasons responsiveness and not merely as the reflex response to cues irrespective of their meaning. It makes all the ethical difference to put a melt-down by an autistic down to “not being able to cope with change” or to imagine it may result from the incapacity to express genuine disagreement to such a change. In what follows, we look at how the above mentioned (sets of) theories fare in this regard.

The ‘Cognition first’ hypotheses and most specifically ToM have already drawn lots of ethical controversies, especially regarding the supposed link to empathy and the credibility of autistic self-advocacy ( McGeer, 2007 ; Milton, 2017 ). It looks for explanations in the smallest physical space possible. Ironically, this social theory of ASD necessarily results in the autistic person and ‘his’ social relations to the rest of the world dropping out of view. As such theories explicitly deny autistic people the basic social-cognitive abilities making up moral agency, they focus on curing autism as if it is a sophisticated kind of diabetes ( Yergeau and Huebner, 2017 ).

“Perception first” hypotheses, on the other hand, provide ample space for moral imagination, and, see above, arguably originate from scientists exercising their moral imagination regarding what it is like to be autistic. They actively engage their readers to make sense of autistics or to wonder how it is to experience the world differently. In using terms like ‘emergence’ (EPF) or ‘scaffolding’ (HIPPEA), they relax the relation between neurology and behavior, so remaining fundamentally open to the lived experience as reported by autistic people. Also, the positives of diversity are stressed (IWT and EPF) as genuine sources of talent and potential. Autistics are seen as prototypically ‘out-of-the-box’ thinkers. At the same time ‘Perception first’ theories do not provide a deflationary account of autism as being ‘just a label’ (i.e., saying that it is not like diabetes at all).

“Perception first” theories then allow going beyond our Catch-22 in creating conceptual space to imagine autistic people as moral agents who are not fully determined by their autism, without reducing reactions of the other to “nothing but” reflexes. We turn now to how this forms a fruitful constraint on theorizing.

The Intellectual Space Afforded by Theories

In his article “On The Very Idea of a Conceptual Scheme” ( Davidson, 1974/2001 ) criticizes the predecessors of the idea of radical pluralism of possible “right” world-versions that was the starting point of our pattern ( Goodman, 1978 ). The idea that there may be multiple right versions of the world (untranslatable conceptual schemes) is untenable for him on the ground that, as far as we make sense of them, we are making sense of each other with reference to our shared world (“Principle of Charity”, p. 197). Davidson thus establishes an intimate relationship between the theoretical and the ethical. A quote from another of his papers [“Psychology as Philosophy” ( Davidson, 2001 )] expresses this more directly:

“The constitutive force in the realm of behavior derives from the need to view others, nearly enough, as like ourselves. (…) The limit placed on the social sciences is set not by nature , but by us when we decide to view men as rational agents with goals and purposes, and as subject to moral evaluation .” (p. 239, our emphasis).

In this light, let us look at our sets of cognitive science theories and their space for scientific creativity and fertility. We have already pointed to the fact that ‘Perception first’ hypotheses seem to talk more both to and from moral imagination. They also tend to start from familiar facts rather than from a set of high level social or cognitive concepts that are unavoidably linked with social norms and subjective assessments from the neurotypical standard. As Milton (2017) coins it, the tendency to start from here can be seen as a ‘Double Empathy Problem’ where the charge of social-cognitive deficits actually is a sign of a lack of empathy or understanding by the neurotypical world of neurodiverse ‘forms of life 17 ’ ( Chapman, 2019 ).

Once a choice is made to commit oneself to specific mechanistic causal chains (nomological monism), the object of study is stripped from the relevance of its subjective, lived experience. The result is that one scientific discipline, in this case, the brain sciences as an extension of the exact sciences, also becomes a master to the others. The ethical stalemate of a Catch-22 can’t be avoided as autistics are ‘locked in’ in their dysfunction. It also goes together with a scientific stalemate as the insights from other scientific disciplines are barred from contributing to a full dynamic of explanation for better understanding . We have seen that “Perception first” theories, insofar they are compatible with anomalous monism, allow to take into account ‘what it is like to be autistic?’ (and arguably a theory like HIPPEA starts from this very question). We explore in Section 4 how such hypotheses can productively combine with other disciplines in what we will call a ‘theorethical stance.’ For now, it is important to note that such a stance does not commit us to a relativistic notion of for instance autism, this is the way Davidson puts it:

“Of course, truth of sentences remains relative to a language, but that is as objective as can be. In giving up the dualism of scheme and world, we do not give up the world, but re-establish unmediated touch with the familiar objects whose antics make our sentences and opinions true or false.” ( Davidson, 1974/2001 , p. 198).

According to Davidson, we must give up the idea of deep, conclusive theories to accept that we are continuously in discussion with each other trying to adapt our language to how the world is and how we can improve our mutual everyday understanding (of the world and each other). It is in this sense that we believe that the concepts of moral and intellectual space are tightly related. A deep theory is an answer to “What is autism?” where individuals are made to fit a theory. This closes in the same stroke the room for understanding individual experiences and creating new explanations (or worlds) in which such experiences can be understood.

Autism in the Behavioral Sciences

Above we reviewed the brain sciences use of autism. We have described how “Cognition first’ theories are incompatible with our pattern. In this subsection, we apply this pattern to autism research in the behavioral sciences. The comparative brevity of the discussion is due to two reasons. First, having established the pattern, it’s more readily applied. Second, given the disparate nature of theories in these fields, we have limited ourselves to selecting two theories. These theories are selected not because they are fully representative for their fields but because they allow us to best illustrate the conceptual force of our pattern. That said, we do believe that the specific theories selected are relevant independent of our argument as they had a significant impact on contemporary thinking about autism 18 .

The selection of autism research papers discussed in this section is given in Table 3 .

Table 3. A sample of human sciences autism research theorizing.

The first column of Table 3 identifies books or papers used as a source. The second column shows an identifier of the human sciences approach taken. The third column (parallel to the explanatory mechanism used in Table 2 ) states the mechanism taken as primary in accounting for autism and column four contains a categorization of the theory in light of a central element of our pattern. It is the latter element that drives us to take the two theories as the relevant ones. Indeed, in Davidson (1970/2001 , p. 213), the fourfold classification of “theories of relations between mental and physical events” is given. We described in Section “Comprehensive Psychological Theories” the difference between nomological and anomalous monism establishing a principled preference for the latter. The two others are nomological and anomalous dualism, the views that there are, respectively, purely psychological laws which need not have a parallel in the physical or that there are no “laws correlating the mental and the physical.” Given that we argued that anomalous monism is, in the context of our pattern, a requirement to avoid the moral dilemma originally sketched, our work in this subsection is for the most part critical. This doesn’t mean that scientific accounts starting from behavior have no contribution to make. It just means that any behavioral sciences theory (just as any cognitive sciences theory) not committed to interdisciplinarity leads to the same kind of combination of moral dilemma and scientific stalemate that we established above for ‘Cognitive first’ theories (and for other theories committed to nomological monism).

Joint Attention

The world made by Hobson (2011) is one of psychological regularities between the facts of child-rearing and the resulting autistic behavior. Although it isn’t denied that there may also be facts of nature in play (reference is made to ToM but also to blind and deaf people), the law leading to problematic autistic behavior is squarely based in nurture and is thus purely psychological. This leads to discarding some elements of the autistic phenotype prominent in autistic self-reports as described above (most notably sensory sensitivities). Indeed, by questioning the sense of autistic self, see ( Constant et al., 2018 ), the mere validity of autistic self-reporting is questioned.

Hobson (p. 151 ff.) proposes a comprehensive psychological doctrine by making a selection of facts based on the insights of attachment theory with focus on joint attention. This theory holds that adult behavior can be characterized in several types (secure, insecure) and such characterization can be reduced to the quality of the attachment between the child and the parent during the rearing phase. The theory establishes a law between abnormal nurture and abnormal behavior. As such, it confirms and entrenches stereotypes of (asocial) autistic behavior in a simple paradigm that can be easily communicated. In a sense, autism is a deviation that is accounted for simply by reference to a deviant child-rearing situation. Autism is used to pinpoint how nurture should be normalized to avoid deviancy. Such a view is compatible, literally through parallelism 19 , with physicalist assumptions as mentioned above.

Although such a law is far removed from the concept of autism as a disease like diabetes, it is easy to see how it is similarly destructive of moral imagination. Indeed, the abnormal behavior concerning social and communicative norms is “nothing but” the inevitable outcome of how one was raised in childhood. In our example of coping with change (see section “The Moral Space Afforded by Theories”), the autistic meltdown is explained by the earlier attachment instead of by the content of change reacted to. This to the extent that it is questioned whether autistics are not just like robots going through the motions ( Hobson, 2011 ), locked up in idiosyncratic conceptual schemes. The category of autism is claimed for developmental psychology (and more specifically for psychoanalysis). Although Hobson abandons a simple biological-mechanistic explanation (based on genes or brain function) in favor of an interactional approach, it does not seem to surpass a mere causal-explanatory approach (a point also made by Karl Jaspers when criticizing psychoanalysis as reductionistic).

(De)Construction

This account would not be complete if it did not address head-on the tension in the pattern we propose. Indeed, a pluralist position as per Goodman (1978) shares the anomalousness of the mental with Davidson’s preferred scheme of anomalous monism. There is, however, a crucial difference: whereas the latter allows some relevance to the question ‘What is autism?’, the former – when taken to the extreme – seems to deny just that 20 .

The analysis of ( Hacking, 1996 , 1999) indeed already points to an (at least partly) purely social dynamic of constructing our understanding of reality. The sociological analysis of ( Eyal, 2013 ; Navon and Eyal, 2016 ) traces the anomalousness of “autism” to a matrix of people sustaining and changing an essentially historical understanding of autism 21 . Whereas these analyses are themselves non-committal (see section “The Fundamental Moral Uses of ‘Autism’ ”) on the relevance of asking “What is autism?”, they resonate in this deconstructionist position denying relevance to the “What is autism?” question.

To illustrate this, we take the two papers by Verhoeff (2013 , 2015) arguing from the historicity and the lack of demarcation of the concept of autism to the conclusion:

I suggest that basic autism research should focus on experiences of impairment and distress, and on how these experiences relate to particular (autistic) behaviors in particular circumstances, (…) ( Verhoeff, 2013 , p. 443).

This particularistic conclusion is explained in Verhoeff (2015 , p. 442), arguing against the “supposed historical continuity in the meaning of autism.” What we are left with is the image of boundless looping of a concept unanchored in any reality in the aboriginal world. Such a situation leads to a deflationary account of autism, inspiring us to look at the case particulars and be skeptical of the categories that are reified behind them.

For Verhoeff, the primary use of autism is the clinical, psychiatric use where the label of autism happens to help co-ordinate therapeutic practice – but where we should suspend judgment on any reality behind it as the priority is to treat the case. Although the presentation of autism as an inherently flexible and dynamic concept opens up the possibility of many different ways of autistic selfhood, it also risks trapping autism purely in psychiatric practice and may deny autistics a transhistorical understanding for their way of being ( Ripamonti, 2016 ). The idea of boundless looping, in so far as it incorporates an idea of radically incomparable conceptual schemes risks denying autistics the very thing so evidently looked for by them in the movement of neurodiversity: a sense of community based on a neurological difference allowing people to identify as autistic without necessarily being dysfunctional or pathological. (De)construction highlights “the looping effects of human kinds” while remaining blind to the “binding effects of humankind” per the “Principle of Charity” ( Davidson, 1974/2001 ). In this way it establishes a deep theory about the historicity of understanding autism and is blind to the moral impetus of trying to explain a timeless reality of autism as a diverse way of being ( Arpaly, 2005 ) sharing everything that is human ( Davidson, 1974/2001 ).

With this, we have connected our detailed argumentation per our pattern to the hypothesis expressed at the end of Section “The Fundamental Moral Uses of ‘Autism’ ”: we need explanations of autism to better understand autistics [in fact, see Milton (2017) : to better understand each other]. Avoiding the Catch-22 – avoiding moral dilemma – de facto puts ethical constraints on theorizing. In line with the idea of Anomalous Monism it also de facto requires interdisciplinary cooperation across brain and social sciences without either claiming to be primordial. The question we turn to now is how to construct a conceptual space wherein we can theorize without violating the ethical constraint.

Reconceptualizing Autism

So, if we refuse to accept that in the case of autism we should not: “ On the level of theory, (…) flit back and forth between extremes as blithely as a physicist between particle and field theories” ( Goodman, 1978 p. 119), then what to do? The lead we may follow is suggested by Goodman (p. 57): “ A reconceptualization of the problem (…) may help to clarify (…) moot matters.” More specifically, he says (p. 68) “ Symptoms, after all, are but clues; the patient may have the symptoms without the disease, or the disease without the symptoms.”

What we have shown is that the current conceptualization of autism as per DSM-5 allows theorists to flit back and forth between nomological theories that either take psychosocial (see section “Joint Attention”) or biological (see section “Autism in the Brain Sciences,” ‘Cognition first’) elements as fully determining “What is autism?”. Similarly, such a DSM-5 conceptualization allows flitting back and forth between seeing autism either through the lens of the brain sciences (nature, see section “Autism in the Brain Sciences”) or through the lens of behavioral sciences (nurture, see section “Autism in the Behavioral Sciences”). In the latter case, one can reject the question “What is autism?” as irrelevant as only the problematic behavior counts from a perspective of the clinic, and that is ‘social construction through-and-through.’ While each of these positions have a certain appeal, they all run into the ethical stalemate exemplified by a Catch-22 that is borne from autistic lived experience. We have also shown that this ethical stalemate leads to scientific stalemate where different scientific disciplines claim precedence over the others, and where one is unable to do justice to the moral demand for an explanation of autism to achieve a better understanding of autistics.

This latter demand is we believe the central one in the neurodiversity movement which, as we noted in the introduction, is intuitively attracted to (as the term itself suggests) a combination of elements of both indifferent and interactive kinds. It seems the only way to capture this is to move to a reconceptualization compatible with Anomalous Monism where it can be expressed that objective neurological differences are non-deterministically linked to (what is now deemed to be) problematic behavior without such difference limiting the moral imagination to interpret autistic reactions as “nothing but” the expression of such a difference.

This situation is like that of quantum physics where quantum phenomena can only be described by combining both particle and wave descriptions but where the latter descriptions are mutually exclusive, i.e., irreducible to each other ( Bohr, 1955 , 1960 ). In the case of autism we then need to independently conceptualize “autistic nature” (the individual “particle” view of autism as is studied in the brain sciences) and “autistic behavior” (the interactional “wave” view of autism as is studied in the social sciences). Any explanation of autism combining these two elements will then automatically leave some indeterminacy. This indeterminacy does direct justice to the moral agency of autistics, in other words they are not (physically or socially) determined to get confronted with mental health issues. That said, in keeping with the Double Empathy Problem ( Milton, 2017 ), whether or not they can enduringly cope with these situations depends as well on the understanding of neurotypical others. It also means such explanations will, necessarily, be interdisciplinary as, in keeping with Anomalous Monism, they intrinsically need to combine elements from the exact and social sciences. This can be illustrated with a simple example from disability studies: social participation is a challenge for people in wheelchairs, but this can only be understood in a specific case by combining inaccessibility of locations for wheelchairs with somatic reasons for requiring a wheelchair. There is no necessity to see a challenge with respect to social participation as a dysfunction intrinsic to the way the individual is. The dysfunction is, in fact, only due to the measures for accessibility being insufficient ( Glackin, 2010 ; Chapman, 2020 ).

What we have shown is that if we abandon the DSM-5 conceptualization where the definition of autism is anchored in dysfunction, we have a principled way forward to express that behavior and biology are linked without either disconnecting them or reducing the one to the other. In line with our pattern, such a reconceptualization not only avoids the moral dilemma inherent in our Catch-22 but also links to the trend in autism research to work in multi-causal frameworks that allow for interdisciplinary contributions without giving priority of any of the disciplines ( Bolis et al., 2017 ). Specifically, it shows it is crucial to integrate quantitative and qualitative research into the lived experience of autistics ( Hens and Langenberg, 2018 ). What remains is to show how such integration can be done, to this we turn in the next section.

A ‘Theorethical’ View of Autism

In this section, we want to show how an account developed in a common space for the ethical and theoretical – in short a ‘theorethical’ approach – opens up the perspective of more fertile interdisciplinary theorizing. In this paper, we cannot obviously elaborate such a theory; we can only attempt, based on current autism research, to illustrate how starting from the desire to understand autistic lived experience produces explanations productively tying insights in behavioral and brain sciences (“wave” and “particle” views of autism) together. In working out such an illustration we will be able to indicate in our conclusion how a reconceptualization as we propose can be implemented with respect to the current DSM-5 conceptualization in a way allowing cooperation between researchers to work out a testable ‘theorethical’ approach.

A first element is to see human behavior as emerging from intersubjective processes. This is pursued by researchers in the enactive tradition, notably ( Fuchs and De Jaegher, 2009 ) and ( Di Paolo and De Jaegher, 2012 ). The concept they elaborate is that of participatory sense-making ( Fuchs and De Jaegher, 2009 ; De Jaegher, 2013 ) in which individuals constantly try to make sense of each other and psychiatrically problematic behavior results from the breakdown of that intersubjectivity. Such a breakdown then becomes – as per our framework in the above section – predictable but also preventable in conceptualizing its multi-causal background. Bolis et al. (2017) make this more explicit in their Dialectical Misattunement Hypothesis (DMH) 22 rethinking “psychiatric conditions as disorders of social interaction.” 23 Their hypothesis is aligned with ours, as is evident from this quote: “To put it simple: intra-subjective parameters are deployed for capturing individual mechanisms, while intersubjective ones describe potential emergent processes on the collective level.”

Here we have in embryonic form a ‘Schrödinger equation’ for autism where the intrasubjective parameters relate to the ‘individual particle’ view of autism as researched in the exact sciences and the intersubjective parameters to the ‘interactional wave’ researched in the social sciences. They come together in the autistic individuals whose lived experience reports are therefore, in line with our argument, crucial in order to ‘make (participatory) sense’ of how explanations of autistic nature and autistic behavior interrelate in an indeterminate way which remains open to the individual moral agency of autistic (and non-autistic!) individuals.

The remaining issue now is to define autistic nature and autistic behavior independently. To do this we take a closer look at a possible hypothesis of autistic nature that is in line with dialectical misattunement as stated by Bolis et al. (2017) . Their DMH is articulated relying on a Predictive Coding (PC) framework. One PC theory of autism, “High and Inflexible Precision of Prediction Error in Autism” or in short HIPPEA ( Van de Cruys et al., 2014 ) is mentioned above as one of the ‘Perception first’ theories in Section “Autism in the Brain Sciences.” In HIPPEA it is hypothesized autism consists in a specific way of dealing with perceptual uncertainty. As the PC framework is a computational framework, autistic nature, following HIPPEA, is an atypical way of processing the difference (the “Prediction Error”) between perceptual input and prior expectations. Autistic nature then consists in atypically giving a High and Inflexible weight to the difference between both (i.e., in an atypical importance of “Precision”). This then leads to a learning style at odds with the requirements of a typical environment which, via the notion of scaffolding mentioned higher, leads to development of behavioral traits associated to autism – for a developed example of this process related to the atypical development of a self, see a paper we co-authored: ( Constant et al., 2018 ).

Now, if we would be able to measure such atypical precision independently of a full behavioral diagnosis including dysfunction (as is the goal of such research programs) then we can picture a situation in which dysfunction (or even misattunement) is no longer a necessary aspect of the conceptualization of autism. To be clear: this measurement would not exhaust the meaning of autism (that would bring us back to the fully reductionist nomological monism!). It would just be the cognitive science element which can be pursued somewhat independently from the social sciences research but always with the realization that both research efforts are firmly anchored in the commonalities of an autistic lived experience that no longer needs to be dysfunctional.

The latter sentence indicates that the resulting conceptualization of autism will be as dynamic as the history of defining autism was and, as we contend, as autistics are . This should not lead to despair because, as our pattern shows, it is precisely this dynamic that allows us to get to explaining all the facts allowing to improve self-understanding of autistics as well as mutual understanding between neurodiverse and neurotypical people (as much as possible avoiding misattunement).

There is, by the way, independent evidence that such a dynamic understanding is indeed what recent autism research points toward. Johnson (2017) makes a step of relying on multi-causal models entangling behavior and neurobiology via ‘common developmental pathways.’ Such a view is moreover compatible with findings of Waterhouse and Gillberg (2014) mentioned above. Indeed, multiple discrete neurobiological or genetic causes can, for instance, converge to some extent in such developmental pathways. This could account for both a commonality of autistic experience and a certain level of heterogeneity in how certain subgroups specifically present an endophenotype. We suggest that it would be worthwhile, based on this reconceptualization, to work out how an epigenetic account, for instance as proposed by Jablonka and Noble (2019 , specifically Figure 1), could constructively contribute to a dynamic understanding of the phenomenon autism. Maybe it helps in closing to refer to the phenomenon of ‘being a good basketball player’: we know a certain biological predisposition helps but at the same time we know that there are many ways to achieve this behavior based on the plasticity of our biology and the canalization of our talent.

The point of this example is to show that openness to understanding autistic lived experience is crucial to achieving truly interdisciplinary breakthroughs allowing to uncover pathways in which ‘particle’ and ‘wave’ explanations get entangled. Unfortunately – and despite efforts of autistic (and many non-autistic) people – this culminated too often in mental breakdown (and what was deemed dysfunctionality) but the latter is not necessary. What is necessary is to break the one-to-one association between autism and pathology. To this we turn in our conclusion.

Conclusion: Introducing ‘Autism Related Disorder’

This has been a long and complex argument leading to an intuitive conclusion at the center of the neurodiversity movement: neurological diversity is a fact that should not be identified with psychiatric problems. Even stronger than this, autism should not even be defined with reference to behavior that is deemed dysfunctional. We have illustrated how such ‘theorethical’ approach might look like. This obviously does not mean that the correct interdisciplinary approach will look like this. What it does mean, however, is that a strict identification of autism with an ASD DSM-5 diagnosis needs to be abandoned. We propose, in line with the reconceptualization that we proposed, to rename it to Autism Related Disorder (ARD). Doing so is a pragmatic way to sever the link between autism and pathology whilst at the same time acknowledging that given circumstances, many autistics experience breakdowns of intersubjectivity that require a formal diagnosis to get access to the care they need ( Glackin, 2010 ; Mole, 2017 ). This not only liberates autistics from psychiatric stigma but, in one and the same move, liberates scientists to fruitfully cooperate beyond disciplinary boundaries integrating knowledge from various strands of brain and behavioral sciences, always anchored in autistic lived experience. In a pragmatic spirit this can be done keeping the DSM-5 criteria identical awaiting new insights of autism research. It will be up to the research community to agree on criteria unrelated to dysfunctionality in order to circumscribe who is autistic. Inspiration can be drawn from the autistic community itself as the gatekeeping function of a formal diagnosis is, by and large, absent from the neurodiversity movement. It anyway also aligns with research practices working with subclinical autism traits ( Waterhouse and Gillberg, 2014 ).

We have argued that to go beyond the Catch-22 of autism research and diagnosis we are to consider all the moral implications of (not) asking ‘What is autism?’. The structure of our argument is a tight fit between theoretical and ethical elements. It is impossible to move beyond the stalemate between accounts of autism in different scientific disciplines if it were not for the pressure of autistic (self-)advocacy. “What is?” questions, when inspired by the motivation of understanding lived experiences, need not be avoided and certainly not discarded. We just have to work with a more dynamic and flexible understanding of autism that allows to develop new ideas in which disciplines can, again, cooperate on fertile new ground. The foundation of this can be, as we suggested, simply obtained by definitively breaking the link between autism and pathology via renaming ASD to ARD in a newly revised version of the DSM.

Postscriptum

The reviewers, quite rightly, point out that our argument leaves the question ‘What is autism?’ maybe more unsettled than it was per the current status quo. We have not tried to preempt the empirical findings related to autism via a purely armchair analysis. Rather, we believe it is of importance to unsettle the status quo precisely in order to allow empirical analysis that may do justice to a commonality of autistic lived experience in all its dynamism and heterogeneity. We do not pretend that our ARD proposal is a magic solution (or in fact can be properly understood outside of the nuance of our argument). We do believe that, in the present context, it best honors the fact that autism is a unique combination of sensitivities which may lead, in the same person, to disability and to exceptionality. In this vein, we refer to the work of Elizabeth Barnes (2016) The Minority Body which decouples disability from the negative connotation of disorder and - in its stead – focuses on ‘disabling conditions’ experienced by ‘minority bodies.’ In this sense, we explicitly propose to view autism as one specific type of a ‘minority brain.’ This obviously leaves empirical research with a new challenge: how to ‘define’ an autistic population vis à vis the (typical) test population. Here we want to remark that this challenge is not entirely new in autism research where use is already often made of notions like ‘subclinical’ traits and where measures other than formal ASD DSM-5 diagnosis are regularly used. We do not believe that there is a simple solution to this problem like, for instance, relying on self-identification (which can be perfectly fine outside of empirical research). Indeed, such self-identification will always depend on personal choice and societal circumstance and will, hence, be powerless to close in on common sensory sensitivities reported across the autistic spectrum. We believe that it is of importance to embrace this challenge rather than to try to find an armchair shortcut around it, precisely because this will be the only way to recognize the dynamism embedded in – what we have argued – is the key touchstone of autistic lived experience.

Author Contributions

JB: initial proposal and manuscript and final revisions. KH: initial manuscript and intermediate revisions. Both authors contributed to the article and approved the submitted version.

This work was partly funded by the NeuroEpigenEthics project that received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (grant agreement No 804881).

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

We thank Sander Van de Cruys for his gentle and helpful review of substantial revisions made to the initial manuscript. We also thank the reviewers involved at various cycles of this paper for helping us to improve it substantially.

• ^ The corresponding author of this paper has been diagnosed with ASD as an adult. It was his choice to use the term ‘autistic’ throughout this paper, in line with autistic preferences, cfr. Kenny et al. (2016) . We also use the terms autism and Autism Spectrum Disorder interchangeably without semantic concessions such as “Autism Spectrum Condition” (ASC). While we applaud the sensitivity shown by those using ASC, this concession does not go far enough to avoid the issues raised in this paper.
• ^ We refer to the video “In My Language” of Amanda Baggs (a non-verbal autistic person) criticizing, inter alia, a distinction between HFA and LFA: https://www.youtube.com/watch?v=JnylM1hI2jc .
• ^ As said at the end of the first paragraph, we do not imply that no fruitful attempts in this direction are taken. In fact, we build on such attempts at the end of the paper to formulate our conclusion. We want to acknowledge the reviewers for pointing out a continuity between this trend in research and in medical practice and our argument in this paper.
• ^ For reference:(A) Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history,(B)  Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history,(C)  Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life), and,(D)  Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
• ^ Such a potential is partly recognized in the World Health Organization’s International Classification of Functioning, Disability and Health for ASD ( Boölte et al., 2014 ) where provision is made to score aspects of function either below or above a typical level of functioning (we thank one of our reviewers for pointing this out to us). Still, this nuance is made within a conceptualization of autism as a disorder.
• ^ While writing this, the supposition of collaboration of Asperger with the Nazi regime was confirmed. As horrific as this is, Czech (2018) states: “Regarding Asperger’s contributions to autism research, there is no evidence to consider them tainted by his problematic role during National Socialism.”
• ^ We are grateful to an reviewer for pointing out this alternative (explored in recent autism research). We will come back in section 4 to how this alternative can be made compatible with common autistic lived experience after a proper reconceptualization of the diagnostic approach in DSM-5.
• ^ By this time, the biological (biomedical) view dominated explanatory debates. However, as we mentioned, and will argue in more detail later, psychosocial explanations share the same lawlike (nomological) explanatory type of approach wherein autism is reduced to a mechanism, albeit in this case one where autistic behavior will be determined primordially by developmental psychology given certain social child rearing conditions.
• ^ That it was never intended in this way can be seen from a remark by Asperger (1944) that autism vs. present “inside and outside of the hospital.” We remark in passing that changing Disorder to Condition , moving from ASD to ASC, does – in our view – not sufficiently break the connection with dysfunction. We will, however, not argue this specific point and simply use ‘autism’ as most widely accepted term.
• ^ This should not be read as a review paper. The autism theories in this section are selected in order to bring out the pattern linking ethical and scientific stalemate. Although they are illustrative of the type of theories that have most animated debate in the scientific and autistic communities, we do not claim they fairly represent recent autism research. In fact, in Section “A ‘Theorethical’ View of Autism” we address constructively how some recent research displays a trend that is, albeit implicitly, aligned with the proposed pattern.
• ^ In social construction, this element is viewed to be skeptical of any physical explanation of autism [see Hacking (1999) ; Eyal (2013) and Verhoeff (2013 , 2015) ]; the patterned review of such views will be further discussed in Section “Autism in the Behavioral Sciences” below.
• ^ It is significant that in line with the ‘Cognition first’ theories reviewed that there was significant literature on why autistic self-reporting could not be relied on because of lack of self-knowledge [see reaction of McGeer (2004) on Frith and Happé (1999) and for a review and alternative: ( Constant et al., 2018 )].
• ^ In fact, we believe that the EPF-hypothesis with its insistence on the ‘savant’ element is too restrictive to do justice to the commonality in autistic lived experience. The IWT-hypothesis puts all emphasis on animal and brain models and in so doing remains closed to the social elements influencing autism.
• ^ A movement that, in the words of Goodman (1978 , p. 34), can be seen as a move back to a style (or personality) as a “complex characterization that serves somewhat as an individual or group signature (…),” clearly reminiscent of the initial attitude of ( Asperger, 1944 ) as reviewed above.
• ^ Note that Fodor himself in ( Fodor, 1983 ) explicitly argued against the possibility of a (central) executive module supposedly compromised in the theory of EF (see p. 101). Also, as mentioned at the end of the previous paragraph, this does not mean that autism theories relying on brain imaging techniques need be based on this simple computer metaphor and may be helpful in mapping out more complex relations between brain activity and behavior (we are grateful to a reviewer for pointing this out).
• ^ This is a criticism that can in our view also be leveled against some neurodiversity views. The view that is expressed in this paper introduces a crucial caveat to such views: there is always some room for a coming-together of minds across the neurological spectrum and this room requires that both sides are sensitive to the limits and constraints of the specific other in front of them ( Milton, 2017 ).
• ^ We mention in passing that the structure of Milton’s argument is, in our view non-coincidentally, very similar in the specific field of autism to the one from Davidson we leverage here. There is also a clear parallel with the concept of participatory sense-making of De Jaegher (2013) that we will use in Section “A ‘Theorethical’ View of Autism” to make the bridge with interdisciplinary approaches as for instance suggested by Bolis et al. (2017) .
• ^ We thank our reviewers for pointing us to the necessity of this disclaimer. Specifically for the field of developmental psychology interested readers would find it useful to consider the work of V. Reddy for a full, balanced treatment of attachment theory.
• ^ Parallelism is one of the accounts classified by Davidson under Nomological Dualism.
• ^ On p. 100 of ( Goodman, 1978 ), he says that we have to: “give up our futile search for the aboriginal world” (ibid., p.100). For Davidson, see higher, such an “aboriginal” world is our starting point, from which the very idea of pluralist conceptual schemes is derived.
• ^ Although not further explored here, it is worth noting that – in line with Hackings view of the intimate connection between deconstruction, unmasking and social construction – that a similar analysis of the deconstruction approach common in disability studies (Goodley and McGuire) should be conducted. In these approaches as well there is much commonality in starting point with our analysis but an incompatibility in ultimately claiming that the social sciences are to have the final say.
• ^ I am indebted to Axel Constant-Pruvost for pointing out the proximity of this hypothesis with the ideas pursued in this paper.
• ^ Put more elaborately for the case of autism: there is an “autistic nature” that, when not appropriately taken into account, in social settings is prone to lead to an intersubjective breakdown associated with what is defined as dysfunctional “autistic behavior” in the sense of DSM-5.

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Keywords : autism, ASD, ASC, ethics, neurodiversity, interdisciplinarity, psychiatry, anomalous monism

Citation: Bervoets J and Hens K (2020) Going Beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking “What Is Autism?”. Front. Psychol. 11:529193. doi: 10.3389/fpsyg.2020.529193

Received: 23 January 2020; Accepted: 12 October 2020; Published: 10 November 2020.

Reviewed by:

Copyright © 2020 Bervoets and Hens. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Jo Bervoets, [email protected] ; [email protected]

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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• PMC9326241.1 ; 2021 Oct 26
• ➤ PMC9326241.2; 2022 Jul 25

Autism spectrum disorder in architecture perspective: a review of the literature and bibliometric assessment of research indexed in Web of Science

Reham moniem ali.

1 Interior Design Department, College of Design, Imam Abdulrahman bin Faisal University, Saudi Arabia, Eastern Province, PO. 1982, Saudi Arabia

Hala A. El-Wakeel

Deema faisal al-saleh, mai ibrahim shukri, khadeeja m n ansari, associated data, underlying data.

Zenodo: Underlying data for 'autism spectrum disorder in architecture perspective: A review of the literature and bibliometric assessment of research indexed in Web of Science'. https://doi.org/10.5281/zenodo.5080242

Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).

Version Changes

Revised. amendments from version 1.

The authors have conducted a more in-depth study by going through title by title, abstract, and keywords to identify the relevant papers in terms of architectural design and built environment perspective and added three more columns to the table no. 1 for the number of papers in architectural and in design in general with the total number of citations. This addition made a significant difference in version 2 of the paper from version 1.  Moreover, the authors have implemented the suggestions given by reviewers, in terms of extending the literature review by adding previous scientometric studies done on ASD research. The researchers have suggested a few emerging areas of the study and highlighted a few emerging and important keywords which were found missing. Overall, the study has been improved now with more extensive research output.

Peer Review Summary

An increasing number of scholarly publications on autism spectrum disorder (ASD) have urged researcher interest in this topic; however, there is still a lack of quantitative analysis. Therefore, this study aims to cover the knowledge gap between the amount of literature published on ASD research on architectural and designers' perspectives compared to the medical and psychological fields. The study has analyzed global research output on ASD from a designer's perspective to recognize this gap related to designing the physical environment. 

Methodology:

The bibliometric method was employed to analyze the published literature from 1992–to 2021. 812 papers were downloaded from the Web of Science for analysis based on annual growth of literature, prolific authors, authorship pattern, organizations, countries, international collaboration, and subject development by keywords and thematic map analyses. Various bibliometric and scientometric software was used to analyze the data, namely Bibexcel, Biblioshiny, and VOS viewer.

The812 research papers were published in 405 sources. 2019 appeared as a productive year (NP=101), and 2014 received the highest number of citations (TC=6634). Researchers preferred to publish as journal articles (NP=538; TC=24922). The University of Toronto, Canada, was identified as a productive institution with 42 publications and 5358 citations. The USA was the leading producing country with 433 publications, and most of the researchers published in the journal " Scientific Reports " (NP=16). The word autism (NP=257) and architecture (NP=165) were more frequently used keywords.

Conclusion:

The study identified a massive gap in the development of literature in ASD for architecture design and built environment perspective, the most important and trending keywords are missing, and the analyses also showed a lack of subject development. The authors have suggested areas and keywords for further research to fulfill the gap in the future.

Background study of ASD

ASD is a neurodevelopmental condition that affects children from a young age. It is marked by functional impairment in social communication, limited interests, selective attention, repetitive habits, as well as hypersensitivity to touch, vision, taste, or sound in certain people ( Remington et al. , 2009 ). Autistic disorder, high-functioning autism (HFA), Asperger syndrome (AS), pervasive developmental disorder-not otherwise specified (PDD-NOS), and atypical autism is all diagnostic terminology that has previously been employed. ASD is expected to affect one out of every 88 children in the United States, with one out of every 56 boys being affected. ( Taghizadeh et al. , 2015 ). The diagnosis rates for ASD have increased sharply worldwide in the last 40 years compared with other disabilities ( Centers for Disease Control and Prevention, 2022 )

Pallasmaa (2005) , diagnosed with ASD, said: 'I confront the city with my body.' The interaction between a person and their environment produces many physical and mental challenges for ASD. Therefore, the built environment is an important factor that significantly influences individuals' behavior directly and indirectly. ASD children are a special case, which should be defined to help them access space and inhabit it. Two issues must be considered to understand the impact of the environment on the development of one's life ( Horne, 1997 ):

• 1-   The identification of the physical environment in its material and symbolic context.
• 2-   The impact of the environment on one's behavior and how people perceive themselves and their surroundings.

Autistic people have difficulties in processing the information from the physical environment through their senses, especially the influence of environmental stressors like noise and clutter, and they are forced to exert more effort to understand it. The difficulty in understanding provokes frustration and erratic behavior.

Theoretical models of autism

Many human-environment interaction research conducted by environmental psychologists have focused on the environment's psychological factors rather than the physical setting. This section will clarify the relationship between autism and the environment.

1- Human ecosystem (HES)

In 1992, Guerin defined the Human ecosystem (HES) theory model in a learning environment to understand autistic behavior. The variables in this progress are related to the specific model components:

• a.   HO, human organism: gender, age, number of children, and the level of diagnosing
• b.   DE, designed environment: control of entry and exit (safety/security); classroom configuration and adaptability to make changes; lighting (artificial light/daylight); acoustics/noise; thermal comfort (temperature, humidity, ventilation, i.e. indoor air quality); wayfinding; building; FF&E (furnishings, fixtures, and equipment) materials and finishes (color, pattern) ( Kopec, 2012 ; Martin & Guerin, 2010 ).
• c.   NE, natural environment: access to daylight and natural ventilation, as well as green space and/or water ( i.e . landscape elements).
• d.   SE, social environment: visual, auditory, and physical communication method, as well as communication and interaction among children and caregivers in the same physical area.

Some researchers regarding the Nature of autism are convinced that autism is a pandemic of modern culture, with environmental factors at the roots such as pollution; researchers found early-life exposure to air pollution may be a risk factor for autism. ( Naviaux, 2012 ).

2- Performance prediction model (PPM)

The performance prediction model (PPM) describes the transactions between the users and their physical environment through the behavior. Also, understand how the physical environment affects user variables by observing behavior. In addition, clarify the interaction between the three components to lead to universal design principles. Even though this model is not explicitly created for ASD children, the research can be applied to users with different personal characteristics or functional abilities. This model consists of three main components (user variables, behavior, and environment). The variables in this progress are related to these specific components:

• a.   User abilities: individual characteristics and functional abilities.
• b.   Task outcome: behavior and experiential.
• c.   Physical environment: physical characteristics, organization, and ambiance.
• d.   Universal design: equitable use, flexibility in use, simple and intuitive, perceptible information, tolerance for error, low physical effort, and size and space for approach and use.

This model is used as a guide for the designer in designing different types of the physical environment for different users because it helps to categorize the users according to their characteristics, which are:

• Cognitive abilities: include all complex mental function proses to make an action, for example, decision-making and planning ( ICF illustration library, 2021 )
• Social and communication: include all components of the communication process with others by using different devices and methods to deliver or perceive massages ( World Health Organization, 2017 )
• Sensory functions: includes touch, smell, visual, and hearing systems ( ICF illustration library, 2021 )
• Mobility: the ability to manage body movements such as changing body position or location, carrying objects, and performing physical activities ( ICF illustration library, 2021 )

The characteristics of autism are varied in intensity, degree, and amount and manifest differently from person to person and over time. The common characteristics associated with ASD are loosely based on the DSM-5, common features of ASD, and PMM on ASD.

• 1.   Cognitive abilities
• 2.   Social and communication interaction
• 3.   Sensory function
• 4.   Activity performance

There is limited research on how environments may affect behavior and be designed to meet the needs of those with ASD. Also, there is a lack of information on the experience of spaces and perceptions by people with autism. Only two research have been found namely 'MEDIATE – a responsive environment designed for children with autism ( Gumtau et al. , 2005 ) and 'Could light colour and source change mood in children with autism? ( Hernandez Rivera, 2020 ).

3- Theoretical underpinnings of design

Interior designers concentrate on the design of the interior environment with the requirements of the person who will inhabit the space as the driving force behind all design decisions. Human factors, lighting, occupant wellbeing and performance, post-occupancy evaluation, research, theories about the relationship between human behavior and the https://discovery.ucl.ac.uk/id/eprint/10108977/7/Hernandez%20Rivera_10108977_Thesis_redacted.pdf designed environment, and universal design are among the ten knowledge areas covered by the 'Human Environment Needs: Research and Application' (HEN) category.

Experts on ASD consider the first six years of school, from preschool to sixth grade, important in reaching children and laying the groundwork for lifelong learning and general wellbeing. Even when daily activities are meticulously organized, classrooms attended by children with ASD or other children are highly dynamic, unpredictable environments. Because of this instability, examining the architecture of classroom space in schools where children with ASD attend from preschool to sixth grade is difficult. However, the framework identified by ( Guerin, 1992 ), which recognized the interaction of the human organism (HO), the BTE, the natural environment (NE), and the behavioral environment (BHE).

Autism spectrum disorder (ASD) is a complicated neurological disorder that, until now, has been inscrutable. The population of individuals on the spectrum worldwide is increasing due to the increased awareness. As their numbers grow, professionals in many fields started studying their ASD cases to provide them with a better life ( Hauptman et al. , 2019 ). Individuals on the spectrum are part of a growing population usually ignored in design despite the current tendency to create designs that focus on persons with special needs. There are binding recommendations and laws on designing buildings that respect physical disabilities, and the field is rich in design applications for physical needs ( Sánchez et al. , 2011 ). By contrast, there is utter indifference toward the person with mental health disabilities, even with guidelines for inclusion of children with physical impairment are used and successful, the inclusion of children with mental disabilities lags much behind ( Bilbo et al. , 2015 ) in their research mentioned that "the environment plays a role in human behavior" that greatly influenced the practice of interior architects designing people centers design. ASD children have sensory processing difficulties, which create challenges in understanding the surrounding environment, thus affecting their behaviors negatively ( Sánchez et al. , 2011 ). The built environment can cause extra confusion, which negatively impacts children with ASD due to the challenging developmental disorder of the ASD. Architects and interior architects are responsible for providing an inclusive built environment to improve the quality of life, especially for people with special needs ( Kopec, 2012 ), yet it is still relatively unnoticed by architects and designers as it's still excluded from building codes or design guidelines. Environmental and behavioral research has profoundly influenced the practice of interior architecture as it's vital to explore the environmental design for autism.

A vast amount of literature has been published on autism in medical and psychological journals over the years. However, few studies from an architectural perspective have been published even though the role of the sensory environment in autistic behavior has been an issue of debate since Leo Kanner first defined the disorder in 1943 ( Kanner, 1943 ). Recently, architects have become interested in finding out about the relationship between environment and autistic behavior to provide a suitable environment and support wellbeing.

Few interior designers and architects have yet started to define codes and guidelines such as Autism Planning and Design Guidelines 1.0 by Knowlton School of Architecture (2018) as a design solution for ASD to build autism-friendly surroundings that support users with ASD and prepare them to face other environments. The designer's approach usually compares children with ASD and without through their behaviors to find the differences in their needs in the environment ( Delmolino & Harris, 2012 ). Environmental and behavioral research has profoundly influenced architecture, and there is a growing need and trend toward user-centered and evidence-based design research to create an environment where people with ASD can thrive.

Few scientometric studies have been done to cover the knowledge gap in the ASD research, in that the authors considered examining the topic generally, such as Ozgur & Balci (2022) . They found that 'studies on autism have increased significantly in recent years. While approximately 150 studies were published annually in the early 80s, around 6000 studies were published in 2020. In this study, 59653 publications were retrieved, 63.69% of which were journal articles. The remaining publications were reviews, meeting abstracts, editorial materials, proceedings papers, etc. The primary language was English (96.70%) for the retrieved articles. Other languages like Spanish, French, German, Portuguese, Russian, Turkish, etc., were also encountered.

Sweileh et al. (2016) studied growth of ASD research from 2005 to 2014 and found a total of 18,490 articles were retrieved. The Journal of Autism and Developmental Disorders, with 48,416 citations and an average of 23.59 citations per article, was identified as the most prolific journal. The United States (US) (n = 8594; 46.48 %), the United Kingdom (n = 2430; 13.14 %) and Canada (n = 1077; 5.8 %) have been most productive countries. King's College London (UK) was found on the top of the list for producing literature and receiving citations. 50% of the highly cited articles were in molecular genetics, and the papers with more than 50 citations were published mainly by authors from USA, UK, and Canada.

The above general studies conclude that most literature is based on medical, biotechnology, and psychological perspectives. Most funding agencies are identified as medical institutions, and the US is the most contributing country to generating the literature. Most ASD research in article form and double and triple authorship has more consideration. The citation rate shows an increase in the trend, and the growth in ASD research literature in terms of medical and psychological are noted as a steady increase and are higher in this decade.

However, the development of ASD literature in the architectural field has not been found. Therefore, based on the scientometric analysis, the present study considers estimating and identifying the gaps in the available literature on ASD from the architectural perspective compared to the literature available from the other perspectives, such as medical and psychological.

Research questions

• 1) What are the annual research trends and types of ASD research based on architectural design perspectives from 1992–to 2021?
• 2) Which authors are the most prolific, and what is the authorship trend in autism research?
• 4) What are the most relevant journals in journals in autism?
• 5) What are the most important organizations and countries in autism?
• 6) What are the most used keywords of autism in the field of architecture?
• 7) What are the most global collaborative countries producing scientific literature on autism?
• 8) What were the most cited documents and cited references in autism?
• 9) What are the most influential funding agencies?

Research methodology

Statistical techniques are used to analyze different types of publications such as books, conferences, journal articles, etc ., known as bibliometrics. Scientometrics is the sub-field of bibliometrics that studies quantitative means of investigation, scholarly publishing practices, publishing trends, trend topics, etc . This study, therefore, applies the scientometric method to ASD in the architecture field to estimate the literature gap. The required literature on autism was retrieved from the Web of Science (as of 4 th June 2021). The following search query involved in the Web of Science database ( Clarivate Analytics, 2020 )

• • TOPIC: "autism"
• • Refined by: TOPIC: "architecture"
• • Further refined by language: English
• • Timespan: All years. Indexes: SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI.

812 documents have been retrieved ( Figure 1 ) for final analysis during 1992–2021. All the research data was downloaded in BibTeX, Tab-Delimited (win), plain text, and analyzed with Microsoft Excel (RRID:SCR_016137; Google Sheets (RRID:SCR_017679) is an open access alternative) and Scientometric and bibliometrics tools, namely Bibexcel ( Persson et al. , 2009 ), Biblioshiny ( Aria & Cuccurullo, 2017 ), and VOSviewer ( van Eck & Waltman, 2010 ).

Results and discussion

From 1992 to 2021, 405 sources were contributed by 5088 authors with 812 papers in autism. Single authored documents were 61 papers; hence authors in autism produce more research in collaboration. The average number of years of publications is 5.74, the average number of citations per document 43.21, and the average number of citations per year per document 5.711. 36,654 references have been consulted to produce 812 research papers. The number of documents per author is 0.16, authors per document are 6.27, Co-authors per document is 8.16, and the collaboration index is 6.71.

Annual research growth and citation's structure in autism spectrum disorder during 1992–2021

The first research paper on autism was recorded in 1992 with 382 citations (no publication indexed in 1993, 1995, 1996, 1997, and 2003), similar results reported by ( Kumar et al. , 2021 ). Though the research output gradually increases, but shallow up until 2012. The autism research increased markedly after 2013, noticeably more than 50 papers appeared every year after 2013. The year 2019 was the most successful in term of the number of the article (NP=101), followed by the year 2016 and 2017, in which the second highest number of research papers published, coincidently the year 2018 and 2020 have equal number published articles (NP=84) and the year 2021 have 35 papers with 19 citations. The highest number of citations received in 2014 (TC=6634) for 53 publications, followed by the year 2011 (TC=4078) for 31 papers and the year 2010 (TC=3108, TP=34) ( Table 1 ).

*NP=Number of Publications **TC=Total Number of Citations

The authors have scanned all these documents to pinpoint the exact number of research papers purely on architectural design perspective and found a quite low number also, some of it belongs to art and design, these numbers represent the actual gap in the literature, which authors intended to explore and found that gap is quite huge. See ( Table 1 ).

The first paper on ASD research based on a purely architectural design perspective was published in 2004 and then in 2008. These papers remain unrecognized since they didn't receive a single citation. After a gap of 5 years, another research published under the title "Autism and Architecture" by Segado VF and Segado TA in 2013 received 2 citations; then, in 2015, two research papers were published, again without citations. In 2016 three research papers were published, namely "Interaction Design in the Built Environment: Designing for the Universal User" with 2 citations, "Designed by the pupils, for the pupils: An autism-friendly school" with 7 citations, and "Autism-Friendly Architecture from the outside in and the inside out An explorative study based on autobiographies of autistic people" with 8 citations. In 2017 only one research published under the name "Toward an autism-friendly home environment" by Nagib W and Williams A received 11 citations. A single research in 2018 as, "Sensory Spaces: Sensory Learning - An experimental approach to educating future designers to design autism schools," by Love JS, published in ARCHNET-IJAR, received only 2 citations. Three research papers were published in 2019 under the title Quality of the built environment from the point of view of people with autism spectrum disorder", "The impact of color and light on children with autism in interior spaces from an architectural point of view," and "Studio teaching experiments- spatial transitioning for autism schools" begged 0, 1,1 citations respectively. During pandemic 2020, only one research was published and didn't receive citations, and in 2021 (continuing years) didn't notice any research. Therefore, only 16 ASD research papers were purely related to architectural design from 812 documents noted from 1992 to 2021, with as many as 11 citations. These number of documents and citations reveal that these research areas are not very popular amongst the researchers. Please refer to the recent growth in general ASD research ( Ozgur & Balci, 2022 ), as mentioned in the literature review.

Type of research papers

The journal articles (NP=537) were the most preferred form, which agrees with ( Rahaman et al. , 2021b ). The review found a second preferred form (NP=142), followed by proceedings papers (NP=71) and then meeting abstract (NP=17). Other documents were minor in the list, published only three papers each. On the other hand, the articles also received the highest number of total cations (24922), followed by review (TC=8916) ( Table 2 ). The research was purely based on an architectural perspective, mostly published as journal articles (13) and then as proceeding papers (3) out of 16. Please refer to ( Table 1 ) for the total number of pure architectural design research.

*NP=Number of Publication **TC=Total Number of Citations

Productive organization

It is evident that the top ten organizational productivity ranges between 25 to 42 publications ( Table 3 ). The University of Toronto is the leading organization in autism research (NP=42), followed by Vanderbilt University (NP=37), University of California, Los Angeles (NP=35), Yale University (NP=33), and Massachusetts General Hospital (NP=30). Harvard Medical School (NP=25) identified as the minor producer of research in the top ten list. Interestingly, most of the listed organization are in the USA (9 organizations), and one organization from Canada. Stanford University was the most cited organization (TC=6686) for 28 publications, followed by Yale University (TC=6059) for 33 research in autism.

Productive country

Moreover, it is found that the top eight countries produced over 50 research papers ( Table 4 ). Only two countries have over 100 articles on autism. The USA had outstanding research output in autism with 433 publications and 27124 citations, followed by the UK (118 publications, 7569 citations), Canada (79 publications, 6816 citations), China (72 publications, 3339 citations), and France (60 publications, 3304 citations). This result parallels the previous scientometric analyses on ASD research, which says that the USA is highly active in producing ASD literature.

The analyses reveal that half of the research in autism contributed by the USA that received the highest number of citations (TC=27124) for 433 publications, followed by the UK with 7569 citations with 118 publications, and Canada with 6816 citations and 79 publications. Australia managed minimum citation (TC=2048) in the list with 46 publications.

The relevant sources in ASD

All the top ten sources have more than 12 publications; coincidentally, six sources ( American Journal of Human Genetics, American Journal of Medical Genetics Part B-Neuropsychiatric Genetics, Biological Psychiatry, Molecular Autism, Molecular Psychiatry, Neuron ) produced 12 publications each. Scientific Reports (Nature Publishing Group) was considered the most relevant source with 14 publications and 203 citations, followed by Nature Neuroscience (Nature Publishing Group) with 14 publications and 1986 citations and Human Molecular Genetics and Plos One with 13 publications each and 1015 and 371 citations, respectively. The analysis reveals that most of the sources belongs to the Q1 category (eight sources), and two in Q2 category. The highest impact factor journal in the list was Nature Neuroscience (JIF=20.07), followed by Neuron (JIF=14.41) and Molecular Psychiatry (JIF=12.38) ( Table 5 ). These results also revealed the gap in the development of the ASD research literature in terms of architectural design perspective. The top ten journals are again from genetic, molecular biology, and biological psychiatry; this top ten listing lags the source in the areas of architecture or architectural design. Hence, the authors have further explored the sources in which the 16 research papers purely on architectural design have been published. They found very few but popular sources in the field, namely, Archnet-IJAR International Journal of Architectural Research, International Journal of Arts and Technology, Housing Studies, Journal of Housing and the Built Environment, Journal of Intellectual Disability Research, Journal of Policy and Practice in Intellectual Disabilities, Advances in Human Factors, Sustainable Urban Planning, and Infrastructure.

*NP=Number of Publication **TC=Total Number of Citations ***JIF=Journal impact factor ****Q=Quartile

Prolific authors

This analysis reveals that the article range of authors varied between nine and 12. Five authors (Devlin B, Geschwind DH, Scherer SW, State MW, and Wang Y) emerged as the most prolific authors with 13 publications each, 4383, 3409, 3338, 3662, and 333 citations, respectively. Buxbaum JD (Icahn School of Medicine at Mount Sinai) found as the second highest prolific author with 13 publications and 2970 citations, followed by Bourgeron T, Eichler EE, and Li Y with 11 publications and 2142, 1944, and 568 citations, respectively. Casanova MF (University of South Carolina School of Medicine) noted as the least contributed authors in the top ten list with nine publications and 361 citations. Devlin B (Mount Sinai School of Medicine) was the most cited author with 4383 citations for 13 publications, followed by Geschwind DH with 3409 citations for 13 publications, and Wang Y (Carnegie Mellon University) managed only 333 citations for 13 publications. The table also shows that the most prolific authors belong from the USA (7 authors), followed by Canada, France, and China. ( Table 6 ). It is also revealed that most of the authors belong to medicine and psychology; the authors from the field of architecture are missing from the top 10 list. There are 24 authors found contributing to ASD research in the field of architectural design, amongst them Tufvesson C; Tufvesson J, and Nagib W; Williams A contributing one paper and begged 11 citations, followed by Kinnaer M; Baumers S; Heylighen A (NP=1, TC=8), Mcallister K; Sloan S (NP=1, TC=7). The other authors with one paper received two citations are Segado Vazquez F; Segado Torres A; Dalton C; and Love JS. Shareef SS; Farivarsadri G received one citation for one paper, and the other nine authors didn't receive a citation.

The pattern of authorship

The Figure 2 illustrated the pattern of authorship in autism literature. It was clear from the figure that the authorship pattern ranged from single to two hundred and forty-seven. The analysis reveals that collaborative research is more prominent among the research of autism over the study period. The top six authorship patterns produced over 50 publications in the field. Three authorship patterns (NP=123) contributed a maximum article in autism, followed by two authorship (NP=120), four authorship (NP=93), five authorship (NP=79), single authorship (NP=61), and six authorship (NP=56). The authorship of 27, 36, 38, 39, 40, 42, 46, 56, 58, 65, 67, 73, 86, 88, 118, 125, 146, and 247 each contributed only single publications in autism. The results also showed that two authorship patterns received the highest number of citations (TC=4775), followed by five authorship (TC=3296) and Three authorship (TC=3071). Rahaman conducted a similar type of authorship pattern analysis ( Rahaman et al. , 2021a ).

Mapping co-occurrence of all keywords (author and indexed)

Figure 3 shows analysis of all keywords used in autism research from 1992–to 2021. The results showed that 3848 keywords appeared in autism research. To map the co-occurrence of all the keywords, minimum of 15 occurrences of keywords were considered for analysis. Out of 3848 keywords, only 79 keywords met the thresholds, and all 79 selected keywords are clustered in Figure 3 with 1737 links and total link strength (5557). The size of the ball indicates a strong network of keywords, with each color representing a distinct cluster.

Cluster 1 comprises 31 keywords (abnormalities, activation, adolescents, adults, architecture Asperger-syndrome, autism, autism spectrum disorder, autism spectrum disorders, behavior, brain, childhood, children, classification, connectivity, cortex, diagnostic interview, fMRI, functional connectivity, high-functioning autism, human cerebral-cortex, meta-analysis, networks, organization, patterns, pervasive developmental disorders, sleep, spectrum disorder, spectrum disorders, white-matter, and young-children).

Cluster 2 has 22 keywords (association, bipolar disorder, copy number variation, disorder, genes, genetic architecture, genetics, genome-wide association, heritability, identification, individuals, linkage, mutations, phenotype, prevalence, psychiatric-disorders, reveals, risk, schizophrenia, spectrum, susceptibility, and variants).

Cluster 3 includes 19 keywords (brain-development, copy number variants, copy-number variation, de-novo mutations, disease, disorders, epilepsy, evolution, expression, gene, intellectual disability, mechanisms, mental-retardation, network, neurodevelopmental disorders, neurons, prefrontal cortex, protein, and structural variation).

Cluster 4 has seven keywords (fragile x syndrome, fragile-x-syndrome, gene-expression, mental-retardation protein, mouse model, rett-syndrome, and synaptic plasticity).

The top ten keywords were autism (frequency=257), architecture (165), autism spectrum disorder (127), children (123), schizophrenia (92), autism spectrum disorders (91), de-novo mutations (86), Risk (73), brain (59) and expression (freq.=55) had weighty number of occurrence with strong total link strength.

Each cluster is based on the theme, which shows the various aspect of the subject and its development. The themes special for architecture or design or built environment are missing to track the development of the subject.

The authors have found a few trendy keywords are missing here, such as acoustics, acoustical control, spatial sequencing, escape spaces, compartmentalization, natural light, fluorescent light, snoezelen, sensory environment, multisensory, neutral sensory, hypersensitive, hyposensitive, sensory trigger, sensory zoning, stimulus level, overstimulating, transition, transition spaces, safety, audio, auditory, auditory processing, distraction, interactive, tactile, tactile sense, altered senses.

Thematic map by title

Figure 4 shows four alternative typologies of themes that can be visualized using a thematic map. The thematic parameter is considered the title selected for the field, the minimum number of words selected is 80, and Unigram is selected for the graph.

The basic theme: Autism spectrum which represented by cluster 1 (autism, spectrum, disorder, children, brain, network, functional, connectivity, based, analysis, sleep, neural, developmental, learning, networks, structural, reveals, system, approach, design, matter, review, robot, resting, control, developing and white).

The motor theme: architecture human in cluster 2 (architecture, human, gene, syndrome, social, development, cortical, protein, autistic, model, synaptic, fragile, neuronal, cognitive, ASD, altered, behavior, mental, mice, role, cortex, expression, function, visual, cell, mouse, processing, and activity.

Niche theme: genetic disorder placed in cluster 3 (disorders, genetic, variants, risk, schizophrenia, neurodevelopmental, genes, psychiatric, rare, common, de, genetics, novo, genomic, related, mutations, copy, disease, mechanisms, and sequencing).

Emerging or declining theme: study genome represented by cluster 4 (study, genome, association, wide and evidence).

Most cited research papers in autism

The top ten papers ( Table 7 ) have more than 300 citations, published between 2007 and2015. "Large-scale brain networks and psychopathology: a unifying triple network model" (2011) by Menon V, published in Trends Cogn Sci was the topmost cited paper (1425 citations) ( Menon, 2011 ), followed by "Synaptic, transcriptional and chromatin genes disrupted in autism" (2014) by De Rubeis S, appeared in " Nature " (1220 citations) ( De Rubeis et al. , 2014 ), "The contribution of de novo coding mutations to autism spectrum disorder" (2014) by Iossifov I, published in Nature (1118 citations) ( Iossifov et al. , 2014 ), "Mapping autism risk loci using genetic linkage and chromosomal rearrangements" (2007) by Szatmari (999 citations) ( Szatmari et al. , 2007 ). "Dendritic spine pathology in neuropsychiatric disorders" (2011) by Penzes (838 citations) ( Penzes et al. , 2011 ), and "A genome-wide scan for common alleles affecting risk for autism" was the least cited paper among the top ten (393 citations) ( Anney et al. , 2010 ). It was noticeable that half of the top ten cited papers were published by Nature Publishing Group. The article entitled "Synaptic, transcriptional and chromatin genes disrupted in autism" ( De Rubeis et al. , 2014 ) has the highest total citations per year (152.50).

*N/TC=Normalized total citation

The papers that are well received in architecture or architectural design are not listed here due to a lack of citations than the papers in the other fields; hence, the ASD research in the given fields is less prevalent. The most cited papers in the architectural field are: ' The building process as a tool towards an all-inclusive school. A Swedish example focusing on children with defined concentration difficulties such as ADHD, Autism, and Down's Syndrome (2009) and 'Toward an Autism-friendly home environment' (2017) received 11 citations each. ' Autism-friendly architecture from the outside in and the inside out: An explorative study based on autobiographies of Autistic people' (2016) received eight citations, and 'Designed by the pupils, for the pupils: An Autism-friendly school' (2016) got seven citations.

Most Cited references in autism research

Table 8 explained the most top ten cited references in autism research. It is clear from the table that all listed references received more than 50 citations. Article entitled "Insights into Autism Spectrum Disorder Genomic Architecture and Biology from 71 Risk Loci" (2015) by Sanders SJ, appeared in 'Neuron' was the most cited (TC=92) reference in autism research ( Sanders et al. , 2015 ), followed by an article named 'Synaptic, transcriptional and chromatin genes disrupted in autism (2014) by De Rubeis S with 91 citations ( De Rubeis et al. , 2014 ), 'and 'The contribution of de novo coding mutations to autism spectrum disorder' (2014) by Lossifov I with 91 citations and appeared in the journal Nature ( Iossifov et al. , 2014 ). The cited references 'De novo gene disruptions in children on the autistic spectrum (2012) by Iossifov I published in 'NEURON' was the most diminutive receiver of citation with 61 TC ( Iossifov et al. , 2012 ). However, the top ten listed references belong to the biotechnology, genetic architecture, and medicinal aspects; the gap identified here is the lack of ASD study on architectural in terms of designer perspective.

Highly influential funding agencies

There are only four funding agencies from the top 10 list which funded more than 100 research papers ( Table 9 ). National Institutes of Health renowned as leading funding agency (313 publications, 23087 citations), followed by the United States Department of Human Health Services (313 publications, 22759 citations), the National Institute of Mental Health (182 publications, 16164 citations), European Commission (111 publications, 8476 citations), and National Institute of Child Health Human Development (66 publications, 7927 citations). The Wellcome Trust appeared as the least influential funding agency among the top ten (36 publications, 3959 citations). The USA was dominant in the top ten list (six funding agencies), followed by the UK (three funding agencies) and one agency from the EU.

It is to be noted that all funding agencies belong to the health and medicine except one that is the 'UK Research Innovation,' which is a good sign for the researcher belonging to the field of innovation, architecture, design, and creativity to apply for a funded research/projects.

Country collaboration in autism

The most dominant country collaborations were the USA and United Kingdom (51 publications), followed by the USA and Canada (43 publications), the USA and China (38 publications), the USA and Italy (26 publications), and the USA and the Netherlands (26 publications). The USA with Sweden collaboration (19 publications) was listed at the bottom of the top ten list. It was interesting to show that the USA collaborated with nine countries (the UK, Canada, China, Italy, the Netherlands, Germany, France, Australia, and Sweden). The UK followed this with two countries (the USA and Canada). ( Figure 5 ).

This bibliometric study has been proposed to cover the knowledge gap between the amount of literature that has been published on autism in medical and psychological journals over the years and the published research with the architectural and design approach. However, no other bibliometric analysis has been done from 1992 to 2021 that comprehensively evaluates and summarizes the literature, progress, and future directions of this key sub-area of ASD research. The results are eye-opening since only 16 out of 812 papers retrieved are purely relevant to the architectural and designers' perspective. The other papers are medicine, psychology, biotechnology, ICT, computer software design, etc.

The keywords and thematic analyses identified the huge missing gap since all are too generic, therefore, the authors have identified a few missing keywords, which leads them to suggest that more ASD research needs to be done in terms of built environment characteristics, negative sensory experiences, and conducive design features.

The literature review indicated that the performance prediction model (PPM) needs more research since, for over 2 decades, only 2 projects (cited in literature review) focused on describing the transactions between the users and their physical environment through the behavior. It also suggested that designers need to work more in defining codes and guideline to build autism-friendly environment to support people with ASD. The top ten analyses of the country, institution and funding agencies show that the USA is highly active in producing ASD research. Stanford University is noted as the most cited organization might be due to its own program for Autism research, extending a good platform for the researchers in this field. The 'UK Research Innovation' is the only funding agency to provide opportunities to researchers in design and innovation.This research also leads researchers to discover the most influential publications, authors, and journals in this field.

Here are a few noteworthy emerging trends (the missing gap in this study) in ASD research where researchers in the field of architectural design and built environment can dwell in are; acoustical control, spatial sequencing, escape spaces, compartmentalization, snoezelen, sensory environment, sensory zoning, overstimulation, transition spaces, safety, auditory processing, tactile sense, altered senses .

Data availability

[version 2; peer review: 2 approved]

Funding Statement

The author(s) declared that no grants were involved in supporting this work.

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Reviewer response for version 2

Peter kokol.

1 Faculty of Electrical Engineering and Computer Science, University of Maribor, Maribor, Slovenia

Authors answered to my comments, and I would like to approve the article.

Is the work clearly and accurately presented and does it cite the current literature?

If applicable, is the statistical analysis and its interpretation appropriate?

Not applicable

Are all the source data underlying the results available to ensure full reproducibility?

Is the study design appropriate and is the work technically sound?

Are the conclusions drawn adequately supported by the results?

Are sufficient details of methods and analysis provided to allow replication by others?

Reviewer Expertise:

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Reviewer response for version 1

Hashem hussein al-attas.

1 Deanship of Library Affairs, King Fahd University of Petroleum and Minerals, Dhahran, Saudi Arabia

The authors have collected an exclusive dataset from Web of Science using quantitative methodology. The bibliometric method to map the global research publication on autism spectrum disorder in architecture perspective, definitely contributes to the field and other researchers. It can help them decide the most productive country, journals, organization, pattern of authorship, most important author keywords, research themes, and new international collaboration. The analyses, results, and interpretation display interesting and beneficial data. Moreover, quality of the text is good. There are a few unnecessary capitalizations in the sentences, but ignorable. Overall the paper represents valuable information regarding autism spectrum disorder in architecture research.

I have enough knowledge in the field of bibliometric and scientometric studies.

The authors performed an interesting bibliometric study. They focused mainly on quantitative aspects of the research on autism-related architectural design. However, the paper should be amended in some aspects to make it more informative for readers and to make the study repeatable.

First, the introduction and the literature review should be extended with a description of bibliometrics, evidence of its successful use (and the reason why they selected bibliometrics as a knowledge synthesis method), the bibliometrics tools used should be shortly described and their use in the study stated more clearly. There are already some bibliometrics studies on autism and other disabilities already published, authors should point to them in the literature review and connect their research to already performed studies (they should also compare their results to results of similar studies in the discussion section).

• In the results section, they should point out which bibliometric tool was used to produce them. The results should also be extended with qualitative aspects, actually, the discussion is mostly missing. What is the meaning of the results, who can use them, and for what purpose. In the conclusion, authors mention that research gaps, research directions could be derived from their results, but the readers could benefit much more if the authors themselves will reveal hot topics, gaps, directions, etc. Authors should describe revealed clusters from keywords analysis in more detail. They should use thematic or content analysis to name and describe clusters, point to relevant literature, etc.

Computer science, bibliometrics, machine learning, health informatics

I confirm that I have read this submission and believe that I have an appropriate level of expertise to state that I do not consider it to be of an acceptable scientific standard, for reasons outlined above.

Deema Al-Saleh

Imam Abdulrahman bin Faisal University , Saudi Arabia

• Comment of reviewer: The authors performed an interesting bibliometric study. They focused mainly on quantitative aspects of the research on autism-related architectural design. However, the paper should be amended in some aspects to make it more informative for readers and to make the study repeatable.

Authors Response : Done, the authors have worked more on the dataset and amended the annual literature growth table 1 to compare the literature growth in general with literature growth from the architectural and designers' perspective.

• Comment of reviewer: First, the introduction and the literature review should be extended with a description of bibliometrics, evidence of its successful use (and the reason why they selected bibliometrics as a knowledge synthesis method), the bibliometrics tools used should be shortly described and their use in the study stated more clearly. There are already some bibliometrics studies on autism and other disabilities already published, authors should point to them in the literature review and connect their research to already performed studies (they should also compare their results to results of similar studies in the discussion section).

Authors Response : Done, the introduction and the literature review have been extended and previous bibliometric studies included and compared the results.

Authors Response : Done, all the issues raised have been addressed.

• Patient Care & Health Information
• Diseases & Conditions
• Autism spectrum disorder

Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior. The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity.

Autism spectrum disorder includes conditions that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and an unspecified form of pervasive developmental disorder. Some people still use the term "Asperger's syndrome," which is generally thought to be at the mild end of autism spectrum disorder.

Autism spectrum disorder begins in early childhood and eventually causes problems functioning in society — socially, in school and at work, for example. Often children show symptoms of autism within the first year. A small number of children appear to develop normally in the first year, and then go through a period of regression between 18 and 24 months of age when they develop autism symptoms.

While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children.

Products & Services

• Children’s Book: My Life Beyond Autism

Some children show signs of autism spectrum disorder in early infancy, such as reduced eye contact, lack of response to their name or indifference to caregivers. Other children may develop normally for the first few months or years of life, but then suddenly become withdrawn or aggressive or lose language skills they've already acquired. Signs usually are seen by age 2 years.

Each child with autism spectrum disorder is likely to have a unique pattern of behavior and level of severity — from low functioning to high functioning.

Some children with autism spectrum disorder have difficulty learning, and some have signs of lower than normal intelligence. Other children with the disorder have normal to high intelligence — they learn quickly, yet have trouble communicating and applying what they know in everyday life and adjusting to social situations.

Because of the unique mixture of symptoms in each child, severity can sometimes be difficult to determine. It's generally based on the level of impairments and how they impact the ability to function.

Below are some common signs shown by people who have autism spectrum disorder.

Social communication and interaction

A child or adult with autism spectrum disorder may have problems with social interaction and communication skills, including any of these signs:

• Fails to respond to his or her name or appears not to hear you at times
• Resists cuddling and holding, and seems to prefer playing alone, retreating into his or her own world
• Has poor eye contact and lacks facial expression
• Doesn't speak or has delayed speech, or loses previous ability to say words or sentences
• Can't start a conversation or keep one going, or only starts one to make requests or label items
• Speaks with an abnormal tone or rhythm and may use a singsong voice or robot-like speech
• Repeats words or phrases verbatim, but doesn't understand how to use them
• Doesn't appear to understand simple questions or directions
• Doesn't express emotions or feelings and appears unaware of others' feelings
• Doesn't point at or bring objects to share interest
• Inappropriately approaches a social interaction by being passive, aggressive or disruptive
• Has difficulty recognizing nonverbal cues, such as interpreting other people's facial expressions, body postures or tone of voice

Patterns of behavior

A child or adult with autism spectrum disorder may have limited, repetitive patterns of behavior, interests or activities, including any of these signs:

• Performs repetitive movements, such as rocking, spinning or hand flapping
• Performs activities that could cause self-harm, such as biting or head-banging
• Develops specific routines or rituals and becomes disturbed at the slightest change
• Has problems with coordination or has odd movement patterns, such as clumsiness or walking on toes, and has odd, stiff or exaggerated body language
• Is fascinated by details of an object, such as the spinning wheels of a toy car, but doesn't understand the overall purpose or function of the object
• Is unusually sensitive to light, sound or touch, yet may be indifferent to pain or temperature
• Doesn't engage in imitative or make-believe play
• Fixates on an object or activity with abnormal intensity or focus
• Has specific food preferences, such as eating only a few foods, or refusing foods with a certain texture

As they mature, some children with autism spectrum disorder become more engaged with others and show fewer disturbances in behavior. Some, usually those with the least severe problems, eventually may lead normal or near-normal lives. Others, however, continue to have difficulty with language or social skills, and the teen years can bring worse behavioral and emotional problems.

When to see a doctor

Babies develop at their own pace, and many don't follow exact timelines found in some parenting books. But children with autism spectrum disorder usually show some signs of delayed development before age 2 years.

If you're concerned about your child's development or you suspect that your child may have autism spectrum disorder, discuss your concerns with your doctor. The symptoms associated with the disorder can also be linked with other developmental disorders.

Signs of autism spectrum disorder often appear early in development when there are obvious delays in language skills and social interactions. Your doctor may recommend developmental tests to identify if your child has delays in cognitive, language and social skills, if your child:

• Doesn't respond with a smile or happy expression by 6 months
• Doesn't mimic sounds or facial expressions by 9 months
• Doesn't babble or coo by 12 months
• Doesn't gesture — such as point or wave — by 14 months
• Doesn't say single words by 16 months
• Doesn't play "make-believe" or pretend by 18 months
• Doesn't say two-word phrases by 24 months
• Loses language skills or social skills at any age

There is a problem with information submitted for this request. Review/update the information highlighted below and resubmit the form.

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Autism spectrum disorder has no single known cause. Given the complexity of the disorder, and the fact that symptoms and severity vary, there are probably many causes. Both genetics and environment may play a role.

• Genetics. Several different genes appear to be involved in autism spectrum disorder. For some children, autism spectrum disorder can be associated with a genetic disorder, such as Rett syndrome or fragile X syndrome. For other children, genetic changes (mutations) may increase the risk of autism spectrum disorder. Still other genes may affect brain development or the way that brain cells communicate, or they may determine the severity of symptoms. Some genetic mutations seem to be inherited, while others occur spontaneously.
• Environmental factors. Researchers are currently exploring whether factors such as viral infections, medications or complications during pregnancy, or air pollutants play a role in triggering autism spectrum disorder.

No link between vaccines and autism spectrum disorder

One of the greatest controversies in autism spectrum disorder centers on whether a link exists between the disorder and childhood vaccines. Despite extensive research, no reliable study has shown a link between autism spectrum disorder and any vaccines. In fact, the original study that ignited the debate years ago has been retracted due to poor design and questionable research methods.

Avoiding childhood vaccinations can place your child and others in danger of catching and spreading serious diseases, including whooping cough (pertussis), measles or mumps.

Risk factors

The number of children diagnosed with autism spectrum disorder is rising. It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both.

Autism spectrum disorder affects children of all races and nationalities, but certain factors increase a child's risk. These may include:

• Your child's sex. Boys are about four times more likely to develop autism spectrum disorder than girls are.
• Family history. Families who have one child with autism spectrum disorder have an increased risk of having another child with the disorder. It's also not uncommon for parents or relatives of a child with autism spectrum disorder to have minor problems with social or communication skills themselves or to engage in certain behaviors typical of the disorder.
• Other disorders. Children with certain medical conditions have a higher than normal risk of autism spectrum disorder or autism-like symptoms. Examples include fragile X syndrome, an inherited disorder that causes intellectual problems; tuberous sclerosis, a condition in which benign tumors develop in the brain; and Rett syndrome, a genetic condition occurring almost exclusively in girls, which causes slowing of head growth, intellectual disability and loss of purposeful hand use.
• Extremely preterm babies. Babies born before 26 weeks of gestation may have a greater risk of autism spectrum disorder.
• Parents' ages. There may be a connection between children born to older parents and autism spectrum disorder, but more research is necessary to establish this link.

Complications

Problems with social interactions, communication and behavior can lead to:

• Problems in school and with successful learning
• Employment problems
• Inability to live independently
• Social isolation
• Stress within the family
• Victimization and being bullied

More Information

• Autism spectrum disorder and digestive symptoms

There's no way to prevent autism spectrum disorder, but there are treatment options. Early diagnosis and intervention is most helpful and can improve behavior, skills and language development. However, intervention is helpful at any age. Though children usually don't outgrow autism spectrum disorder symptoms, they may learn to function well.

• Autism spectrum disorder (ASD). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/facts.html. Accessed April 4, 2017.
• Uno Y, et al. Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder. Vaccine. 2015;33:2511.
• Taylor LE, et al. Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine. 2014;32:3623.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Overview of management. https://www.uptodate.com/home. Accessed April 4, 2017.
• Autism spectrum disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-5. 5th ed. Arlington, Va.: American Psychiatric Association; 2013. http://dsm.psychiatryonline.org. Accessed April 4, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Complementary and alternative therapies. https://www.uptodate.com/home. Accessed April 4, 2017.
• Augustyn M. Autism spectrum disorder: Terminology, epidemiology, and pathogenesis. https://www.uptodate.com/home. Accessed April 4, 2017.
• Bridgemohan C. Autism spectrum disorder: Surveillance and screening in primary care. https://www.uptodate.com/home. Accessed April 4, 2017.
• Levy SE, et al. Complementary and alternative medicine treatments for children with autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North America. 2015;24:117.
• Brondino N, et al. Complementary and alternative therapies for autism spectrum disorder. Evidence-Based Complementary and Alternative Medicine. http://dx.doi.org/10.1155/2015/258589. Accessed April 4, 2017.
• Volkmar F, et al. Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2014;53:237.
• Autism spectrum disorder (ASD). Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/autism/Pages/default.aspx. Accessed April 4, 2017.
• American Academy of Pediatrics policy statement: Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics. 2012;129:1186.
• James S, et al. Chelation for autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010766.pub2/abstract;jsessionid=9467860F2028507DFC5B69615F622F78.f04t02. Accessed April 4, 2017.
• Van Schalkwyk GI, et al. Autism spectrum disorders: Challenges and opportunities for transition to adulthood. Child and Adolescent Psychiatric Clinics of North America. 2017;26:329.
• Autism. Natural Medicines. https://naturalmedicines.therapeuticresearch.com. Accessed April 4, 2017.
• Autism: Beware of potentially dangerous therapies and products. U.S. Food and Drug Administration. https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm394757.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery. Accessed May 19, 2017.
• Drutz JE. Autism spectrum disorder and chronic disease: No evidence for vaccines or thimerosal as a contributing factor. https://www.uptodate.com/home. Accessed May 19, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Behavioral and educational interventions. https://www.uptodate.com/home. Accessed May 19, 2017.
• Huebner AR (expert opinion). Mayo Clinic, Rochester, Minn. June 7, 2017.

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