autism thesis architecture

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List

• 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.

• Anney R, Klei L, Pinto D, et al.: A genome-wide scan for common alleles affecting risk for autism. Hum Mol Genet. 2010; 19 ( 20 ):4072–4082. 10.1093/hmg/ddq307 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Aria M, Cuccurullo C: bibliometrix : An R-tool for comprehensive science mapping analysis. J Informetr. 2017; 11 ( 4 ):959–975. 10.1016/j.joi.2017.08.007 [ CrossRef ] [ Google Scholar ]
• Bilbo SD, Nevison CD, Parker W: A model for the induction of autism in the ecosystem of the human body: the anatomy of a modern pandemic? Microb Ecol Heal Dis. 2015; 26 :26253. 10.3402/mehd.v26.26253 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Centers for Disease Control and Prevention: Data & Statistics on Autism Spectrum Disorder . Autism Spectrum Disorder (ASD).2022; [cited 2022 Jun 10]. Reference Source [ Google Scholar ]
• Clarivate Analytics: Web of Science. 2020. Reference Source [ Google Scholar ]
• Courchesne E, Pierce K, Schumann CM, et al.: Mapping Early Brain Development in Autism. Neuron. 2007; 56 ( 2 ):399–413. 10.1016/j.neuron.2007.10.016 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• De Rubeis S, He X, Goldberg AP, et al.: Synaptic, transcriptional and chromatin genes disrupted in autism. Nature. 2014; 515 ( 7526 ):209–215. 10.1038/nature13772 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Delmolino L, Harris SL: Matching Children on the Autism Spectrum to Classrooms: A Guide for Parents and Professionals. J Autism Dev Disord. 2012; 42 ( 6 ):1197–1204. 10.1007/s10803-011-1298-6 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Di Martino A, Yan CG, Li Q, et al.: The autism brain imaging data exchange: towards a large-scale evaluation of the intrinsic brain architecture in autism. Mol Psychiatry. 2014; 19 ( 6 ):659–667. 10.1038/mp.2013.78 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Gaugler T, Klei L, Sanders SJ, et al.: Most genetic risk for autism resides with common variation. Nat Genet. 2014; 46 ( 8 ):881–885. 10.1038/ng.3039 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Guerin B: BEHAVIOR ANALYSIS AND SOCIAL PSYCHOLOGY: A REVIEW OF LANA’S ASSUMPTIONS OF SOCIAL PSYCHOLOGY†. J Exp Anal Behav. 1992; 58 ( 3 ):589–604. 10.1901/jeab.1992.58-589 [ CrossRef ] [ Google Scholar ]
• Gumtau S, Newland P, Creed C, et al.: MEDIATE - a responsive environment designed for children with autism . In: Accessible Design in the Digital World Conference .2005;1–8. 10.14236/ewic/AD2005.14 [ CrossRef ] [ Google Scholar ]
• Hauptman M, Stierman B, Woolf AD: Children With Autism Spectrum Disorder and Lead Poisoning: Diagnostic Challenges and Management Complexities. Clin Pediatr (Phila). 2019; 58 ( 6 ):605–612. 10.1177/0009922819839237 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hernandez Rivera N: Could light colour and source change mood in children with autism? Doctoral thesis, UCL (University College London).2020. Reference Source [ Google Scholar ]
• Horne R: Representations of medication and treatment: Advances in theory and measurement. In: Perceptions of Health & Illness. London: Psychology Press,1997;520. Reference Source [ Google Scholar ]
• ICF illustration library: ICF illustration library .2021. Reference Source [ Google Scholar ]
• Iossifov I, O’Roak BJ, Sanders SJ, et al.: The contribution of de novo coding mutations to autism spectrum disorder. Nature. 2014; 515 ( 7526 ):216–221. 10.1038/nature13908 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Iossifov I, Ronemus M, Levy D, et al.: De novo gene disruptions in children on the autistic spectrum. Neuron. 2012; 74 ( 2 ):285–299. 10.1016/j.neuron.2012.04.009 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Kanner L: Autistic disturbances of affective contact. Nervous Child. 1943; 2 :217–250. Reference Source [ Google Scholar ]
• Knowlton School of Architecture: Autism Planning and Design Guidelines 1.0 . The Ohio State University;2018;234. Reference Source [ Google Scholar ]
• Kopec DA: Environmental psychology for design. Fairchild Books. learning-therapy cluster.jpg.2012. [ Google Scholar ]
• Kumar S, Joshi M, Rahaman MS, et al.: Research Productivity on Human Migration in the Himalayan Region during 1947-2019: A Bibliometric Study. Library Philosophy and Practice (e-Journal). 2021;4909. Reference Source [ Google Scholar ]
• Marshall CR, Noor A, Vincent JB, et al.: Structural variation of chromosomes in autism spectrum disorder. Am J Hum Genet. 2008; 82 ( 2 ):477–488. 10.1016/j.ajhg.2007.12.009 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Martin CS, Guerin D: The interior design profession’s body of knowledge and its relationship to health: safety: and welfare. Council for Interior Design Accreditation.2010. Reference Source [ Google Scholar ]
• Menon V: Large-scale brain networks and psychopathology: a unifying triple network model. Trends Cogn Sci. 2011; 15 ( 10 ):483–506. 10.1016/j.tics.2011.08.003 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Naviaux R: ASD & Ecosystem . Autism Research institute.2012. Reference Source [ Google Scholar ]
• Neale BM, Kou Y, Liu L, et al.: Patterns and rates of exonic de novo mutations in autism spectrum disorders. Nature. 2012; 485 ( 7397 ):242–245. 10.1038/nature11011 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• O’Roak BJ, Vives L, Girirajan S, et al.: Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations. Nature. 2012; 485 ( 7397 ):246–250. 10.1038/nature10989 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Ozgur EG, Balci S: The Evolution of Autism: A Bibliometric Analysis. Acta Medica Nicomedia. 2022; 5 ( 1 ):1–7. Reference Source [ Google Scholar ]
• Pallasmaa J: The Eyes of the Skin: Architecture and the Senses . John Wiley & Sons.2005. Reference Source [ Google Scholar ]
• Penzes P, Cahill ME, Jones KA, et al.: Dendritic spine pathology in neuropsychiatric disorders. Nat Neurosci. 2011; 14 ( 3 ):285–293. 10.1038/nn.2741 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Persson O, Danell R, Schneider JW: How to use Bibexcel for various types of bibliometric analysis . In: Celebrating scholarly communication studies: A Festschrift for Olle Persson at his 60th Birthday . ed. F Åström, R Danell, B Larsen, J Schneider. International Society for Scientometrics and Informetrics.2009. Reference Source [ Google Scholar ]
• Pinto D, Pagnamenta AT, Klei L, et al.: Functional impact of global rare copy number variation in autism spectrum disorders. Nature. 2010; 466 ( 7304 ):368–372. 10.1038/nature09146 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Rahaman MS, Abdel Magid IM, Ahmad S, et al.: Scientometric Profile of the Imam Abdulrahman Bin Faisal University : A leading University of Eastern Province, Saudi Arabia. Libr philos pract. 2021a;1–23. Reference Source [ Google Scholar ]
• Rahaman MS, Kumar S, Ansari KMN, et al.: Twenty-five years of global research publications trends of novel coronavirus: A scientometrics assessment. Libr philos pract. 2021b;1–17. Reference Source [ Google Scholar ]
• Remington A, Swettenham J, Campbell R, et al.: Selective Attention and Perceptual Load in Autism Spectrum Disorder. Psychol Sci. 2009; 20 ( 11 ):1388–93. 10.1111/j.1467-9280.2009.02454.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Sánchez PA, Vázquez FS, Serrano LA: Tourism and the Built Environment. Architectural Tourism. 2011;7–56. 10.1007/978-3-658-06024-4_2 [ CrossRef ] [ Google Scholar ]
• Sanders SJ, He X, Willsey AJ, et al.: Insights into Autism Spectrum Disorder Genomic Architecture and Biology from 71 Risk Loci. Neuron. 2015; 87 ( 6 ):1215–1233. 10.1016/j.neuron.2015.09.016 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Sanders SJ, Murtha MT, Gupta AR, et al.: De novo mutations revealed by whole-exome sequencing are strongly associated with autism. Nature. 2012; 485 ( 7397 ):237–241. 10.1038/nature10945 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Sebat J, Lakshmi B, Malhotra D, et al.: Strong association of de novo copy number mutations with autism. Science (New York, N.Y.). 2007; 316 ( 5823 ):445–449. 10.1126/science.1138659 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Sweileh WM, Al-Jabi SW, Sawalha AF, et al.: Bibliometric profile of the global scientific research on autism spectrum disorders. Springerplus. 2016; 5 ( 1 ):1480. 10.1186/s40064-016-3165-6 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Szatmari P, Paterson AD, Zwaigenbaum L, et al.: Mapping autism risk loci using genetic linkage and chromosomal rearrangements. Nature Genetics. 2007; 39 ( 3 ):319–328. 10.1038/ng1985 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Taghizadeh N, Davidson A, Williams K, et al.: Autism spectrum disorder (ASD) and its perioperative management. Paediatr Anaesth. 2015; 25 ( 11 ):1076–1084. 10.1111/pan.12732 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• van Eck NJ, Waltman L: Software survey: VOSviewer, a computer program for bibliometric mapping. Scientometrics. 2010; 84 ( 2 ):523–538. 10.1007/s11192-009-0146-3 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• World Health Organization: WHO Strategic Communications Framework . World Health Organization,2017;56. Reference Source [ Google Scholar ]

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.

Sarth Khare

Advanced Autism Research and Care Centre

Project type, undergraduate architecture thesis, case studies, project duration, secondary research, contextual interviews, affinity mapping, sustainability analysis, swot analysis.

This project demonstrated how the built environment can play a role in reducing the suffering and trauma of Autistic individuals. I designed an empathetic and sensitive threshold of spaces for the smooth transition of Autistic individuals from this safe sanctuary to vocational training and in-turn to the outside world.

Autism or Autistic Spectrum Disorder (ASD) is a disorder of profound social disconnect rooted in early brain development. It refers to a range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as by unique strengths and differences. Symptoms can range from mild to very serious. It’s a big challenge before our society as most recent reviews tend to estimate a prevalence of 1–2 such cases per 1,000 of population.

Even I have a case of severe ASD in my family. The experience is very painful and traumatic. So this issue is very close to my heart and I want to do whatever I can, in my own capacity, to ameliorate the trauma of the artistic child and the family.

Project Area

S.a.s. nagar, punjab, india, building type, institution.

Designing for Autism

There is no known cure for this disorder. Emphasis is on safety, self-sufficiency, rehabilitation and on managing the triggers of excitement. Combination of strategies like treatment, therapies, education for cognitive development, skill training and positive calming environment are employed towards this end.

Through this thesis, I propose to explore as to how the built environment can assist comfortable living, growth and rehabilitation of autistic children and encourage them to participate in class and social interaction. This will be achieved through research on the built environment, autistic behavior and the role of natural light, color, smell, temperature and sound control to create a safe, interactive and engaging learning environment.

I believe that with empathetic and sensitive design, the built environment can play a significant role in reducing suffering and trauma of autistic children and help them in the path of growth and self-sufficiency

Establishing a Design Criterion

The first step of the exercise was to research certain Principles—elements that aid Austistic individuals in a built-environment and guide design of this research centre. 

There is a dearth of research on how an ideal built-environment can cater to the needs of people with ASD. Some controlled experiments have resulted in a number of design criteria compiled by architects around the world. I later used these as a basis for designing

I chose two local schools as Case Studies and also an international school for learning how spaces, elements and functions are distributed and if I could learn something from the problems that those buildings are currently facing.

Functional Diagrams

From Case Studies, Area Programs & Contextual Interviews I mapped the relationship of spaces and their tangible and intangible features to co-relate functions, spaces and scale.

Site, Massing & Concept

Building technologies and design, building technologies.

Primary Building Material - Compressed Stabilized Earth Blocks (CSEB)

Structural Elements - CSEB Composite Beams and Columns

Roof - Ferrocement Channel Roof

Green Technologies

. Water Conservation & Management - Low Cost Plumbing Fixtures, min.hardscapes & rain water harvesting

Solar Energy Utilization - Installation of PV Panels & Solar Assisted Water heating Systems

Energy Efficiency - Low Energy Consumption Lighting Fixtures, Lighting through Solar Energy Panels

Waster Management - Segregation of Waste and Organic Waste Water Management

The intervention spaces should be away from the access points due to heavy noises and acoustic stimulation.

The intervention spaces and the classroom should be oriented such that they do not get direct glare.

The administrative spaces should have direct access to the rest of the functions.

The entire circulation should be uninterrupted.

Clear areas of high stimulation and low stimulation should be provided in the building.

Greater emphasis should be given or community participation while securing spaces for individual escape.

The programs should be divided into the floors according to their level of sensory stimulation.

The standards for lighting and acoustic requirements need to be judged differently for the spaces used by ASD individuals.

Learnings 

Comments by the jury.

"A major part of your design has gone into following all the bye-laws of the building which makes it close to build-able. But this has led to compromises on many levels which interfere with the design concepts. During academics, the student shouldn't be overburdened with the practicality so that he may focus more on the design. Those are the things he would definitely learn in the office. It's good that the design shows innovative construction techniques. But only if you had excused the bye-laws and built the centre without such high restriction it would have been something entirely different!"

Thesis Jury, School of Planning and Architecture | May, 2017

Academia.edu no longer supports Internet Explorer.

To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to  upgrade your browser .

Enter the email address you signed up with and we'll email you a reset link.

• We're Hiring!
• Help Center

An architecture for autism: Concepts of design intervention for the autistic user

2008, ArchNet-IJAR: International Journal of Architectural …

Page 1. AN ARCHITECTURE FOR AUTISM: CONCEPTS OF DESIGN INTERVENTION FOR THE AUTISTIC USER Magda Mostafa Archnet-IJAR, International Journal of Architectural Research Copyright © 2007 Archnet-IJAR, Volume 2 - Issue 1 - March 2008 - (189-211) 189 ...

Related Papers

International Journal of Architectural Research Archnet Ijar

Magda Mostafa

Archnet-IJAR : International Journal of Architectural Research

Joan S Love

Keywords: autism schools; sensory environment; design education; interior architecture; student experience. Abstract: Universities and design schools have a responsibility to ensure that the education of future designers enables design for special populations, in this case specifically children with autism. This paper presents a case study of an autism defined experimental teaching-led design project, within a first-year university Interior Architecture course, on which the author is a tutor. It draws on the author's extensive working knowledge of autism issues, incorporating mediation between SEN schools and design students, and employing research informed teaching. The project involves a new local free school for autism, at a temporary site. The experiment is designed to challenge students, emphasising the importance of understanding how primary research, accessed directly from the end users, informs progressive design thinking. It attempts to influence their design work in subsequent years at university and in practice, and facilitate bridging the gap between academic research and real-life application. This paper seeks to identify how an autism defined project, focussed on student-centred learning and encompassing choosing sessions with children with ASD, can be taught in the first year of undergraduate study. Further, it aims to analyse how the teaching styles and content of a partially 'live' community design project impact on the participants. This is achieved by describing the details and challenges of the project together with the interactions between the students and the school. It concludes that the project adds value to the student experience, builds student confidence and eliminates preconceived ideas surrounding autism. It shows that design can be an interactive process between university and special schools. Equally, the pitfalls of a live project of this nature are highlighted, as is the need for modification before similar projects are reproducible as viable educational models.

Andrei Pomana

LUMEN TCA 2014 Conference 21-22 November 2014, Targoviste (http://conferinta.info/) As autism is becoming a more severe issue for society since its discovery in the mid ‘40s1, the scientific community is on an endless quest for answers. Although sensory sensitiveness for people with autism is still a debate among specialists, more and more studies show the link between the major autistic disabilities and perception.2 As the theory begins to gain ground, it also begins to receive interest from the architecture community. Since architects are held responsible for creating environments, a few theories have emerged regarding architecture for people with autism. In accordance with treatment plans, two major design approaches have been created, both based on the perception issues of people with autism, and also possessing features almost opposite to one another. While Sensory Design Approach focuses on creating a controlled sensory environment that makes autistic people feel comfortable, therefore facilitating skill acquirement, the Neuro-Typical Approach is centered on direct integration to different typical urban and public situations. The paper concentrates on the analysis of both design methods and examines which of the two would give the best results in the long term. This means that the main purpose should be integration into society and the ability of people with autism to lead an independent life. Also, the study represents a research for an architectural, urban, social and educational program that preceded an experimental architectural model that best suites the conditions and needs of people with autism. [1] Frith, Uta (2003) - Autism: Explaining the Enigma 2nd edition, Oxford, (Blackwell). [2] Russo N, Foxe JJ, Brandwein AB, Altschuler T, Gomes H, Molholm S. (2010 Oct) - Multisensory processing in children with autism: high-density electrical mapping of auditory-somatosensory integration, Autism research

“ICAR 2015: Re[search] through architecture”, 26-27 March 2015

Autism is regarded as the most severe psychiatric syndrome of early childhood. Because the disease cannot be fully treated, the autistic child becomes the autistic adult, its condition depending on the severity of the syndrome and mostly on the treatment process. Since any person will spend about 75% of his life as an adult, the task of autism treatment is to prepare children to gain independence and to insure integration into society. As a result, people with autism need to be prepared at the earliest age to interact with other children and integrate into the public school system, which will determine a mental development similar to normal people. [1] By doing this, autistic and non-autistic will learn similar sets of skills which will later facilitate their integration. Also, because they will get in contact with autistic children at an early age, non-autistic people will have a clearer understanding of autism and therefore be able to easily integrate them in work and social activities later in life. [2] Present design methods for autism treatment centers concentrate either on skill development (Sensory Design Theory) [3] or rigid adaptation to day-to-day circumstances (Neuro-Typical Approach) [4] without paying much attention to future autism integration. The paper focuses on analysing architectural methods that should be implemented in autism treatment institutions in order to facilitate the transition between the therapy environment and public education circumstances. The study establishes the difference between integration and assimilation of people with autism and refines present design approaches in order to achieve a more efficient integration process. Also, the study aims to improve the design methods that are presently used in treatment facilities, in order to make a better connection with post-therapy situations by introducing variation of sensory stimulation in the therapy spaces as well as interaction spaces for autistic and non-autistic peers inside autism treatment centers. [1] Frith, Uta (2003) – Autism: Explaining the Enigma 2nd edition, Oxford, (Blackwell) [2] Russo N, Foxe JJ, Brandwein AB, Altschuler T, Gomes H, Molholm S. (2010 Oct) – Multisensory processing in children with autism: high-density electrical mapping of auditory-somatosensory integration, Autism Research Journal, International Society for Autism Research [3] Mostafa, M (2014) - ARCHITECTURE FOR AUTISM: Autism ASPECTS în School Design, International Journal of Architectural Research, Volume 8 [4] Henry, Christopher N. (2011 Nov) "Designing for Autism: The ‘Neuro-Typical’ Approach", ArchDaily

Zsofia Maurer

Diane Parham

Volkmar/Handbook

Nikos Salingaros

Abstract Pre-industrial architects inherently knew the effectual dimension of design through its materiality, detail, and form. Until now, the intellectual dichotomy of human thinking held that mind and body were separate entities, drawing a distinction between reasoned thought and feeling. The early Greek philosophers distinguished between these two realms. Theories on beauty, the human aesthetic impulse, and design were divided along the objective and subjective lines for centuries.

Subradeepak Rams

Ashraf M. Salama

Archnet-IJAR: International Journal of Architectural Research After 2 Years: 85 Contributions, 70 Scholars, 27 Countries.

RELATED PAPERS

Archnet-IJAR: International Journal of Architectural Research

Early Child Development and Care

Pamela Heaton , Francesca Happé

Support for Learning

Keith McAllister , Karim Hadjri

Basant Ahmed

IOSR Journals

Canadian Journal of Occupational Therapy

Jill Ashburner

Australian Occupational Therapy Journal

Alex Woolner

Danielle Ropar , Katie Greenfield

AUBEA 2017: Australasian Universities Building Education Association Conference 2017

Temple Grandin

Journal of Autism and Developmental Disorders

Robyn Young , Manya Angley

Richard Leibbrandt

Sarina Goldstand

Antonia Hamilton

Elena Patten , Grace Baranek

Progress in neurobiology

Ryan Stevenson

Occupational Therapy International

iram batool

Iasir Journals

Psychological review

Johan Wagemans

Ildar Farkhatdinov

American Journal of Chinese Medicine

Roxanne Warren , Louisa Silva , Anita Cignolini , Sarojini Budden

Ralph Savarese

Journal of autism and developmental disorders

Maureen Geraghty

Bernard Golse , Laurence Vaivre-douret

International Journal of Psychological Studies

Akio Wakabayashi

Isabel Killoran , Dagmara Woronko

Frontiers in Integrative Neuroscience

The Cerebellum

Leonard Koziol , Deborah Budding

Guy Rouleau

Sarah Schoen

Applied neuropsychology. Child

Leonard Koziol

Pediatric Research

Srikantan Nagarajan

jacob bjerre mikkelsen , Quentin Stevens

lucy miller

RELATED TOPICS

•   We're Hiring!
•   Help Center
• Find new research papers in:
• Health Sciences
• Earth Sciences
• Cognitive Science
• Mathematics
• Computer Science
• Academia ©2024

An Architecture for Autism: Concepts of Design Intervention for the Autistic User

Architecture for Autism: Overview and Analysis

Autism is a complicated spectrum disorder that involves consistent change of social interaction, verbal and nonverbal communication. Autistic children face difficulty in communication and working with the world outside. The effects of autism show severe signs and symptoms in children. The first symptoms are revealed in children around two to three years old. But apart from this, few children present symptoms until they are a toddler. If symptoms are noticed earlier the better as you can aide it as soon as possible. You can have  digital therapy referrals that can assist you in your situation and help you out the best that they could. Give answers to your inquiries and right treatment for your child.

According to the CDC, one in 59 children is estimated to have autism. Therefore as a designer, we have a solid responsibility to design spaces for these specially-abled children.

The latest study revealed autism is more common in boys than in girls, and it is a lifelong condition connected to the child. Moreover, children diagnosed with autism syndrome can live life independently as every child deserves the best. Hence as a designer, it is our responsibility to make it possible. 

Need of Autism and Architecture

According to the latest report by CDC estimates that 2-5 children out of 1000 have symptoms of autism disorder. In addition to this, the numbers are increasing rapidly. In India, 1 in 88 are suffering from autism syndrome. The government only recognized the disorder in 2001, till the 1990s, there were reports that autism didn’t exist in India (dry Vinod Kumar Goyal TOI). These alarming rates of increase call for attention by all the fields, and clear architecture has been ignoring the effect of the built environment in their development. 

Such statistics are encouraging designers to look for specially-abled children. The increasing numbers tell us that as a designer we are responsible for designing the spaces for specially-abled users . It doesn’t matter if it is a mental or physical disability. Now the architecture industry has to come forward to design spaces for the specially-abled.

Classification of Autism Syndrome

Autism syndrome is common in children; when we are about to design spaces for them, it is important to know the types and classification of the condition. It helps in understanding the condition and encourages design for a user-end experience. The autism syndrome is classified as follows :

• Asperger Syndrome

Autism children who are diagnosed with Asperger’s syndrome are very intelligent and can handle their daily activities. The autistic child might be very focused on topics of interest but will find it difficult to socialize with others.

• Pervasive developmental disorder

The pervasive developmental disorder is the next supreme level of Asperger’s syndrome. It might not appear like an autism disorder but has an extreme level of behavioral pattern.

• Autistic disorder

It has the same signs and symptoms as Asperger’s syndrome; the autistic child will find it difficult to interact with others and have slow learning skills.

• Childhood disintegrative disorder

Childhood disintegrative disorder is the rarest and severe part of the syndrome. It is a seizure disorder where an autistic child loses all social and mental skills during the first five years.

• Rett Syndrome

Rett Syndrome is associated with autism disorder, and experts group it under spectrum disorder. A genetic mutation causes it; therefore, it is not considered ASD. 

Therapy spaces for Autistic children

When designing for autistic-oriented users, we must look into their behavior patterns as a designer. Autistic children have different ways of communication, and therefore we must design spaces that help in easier communication with its user. The designer must add a sense of connection, and an architect must add calmness for specially-abled users. 

• Occupational therapy

Occupational therapy teaches a skill that helps the person live as independently as possible skills might include dressing, eating, bathing, and relating to people

• Sensory integration therapy

Sensory integration therapy helps the person deal with sensory information like sights, sounds, and smells. In addition to this, it helps autistic children who are not bothered by the sound.

• Speech therapy

Speech therapy has a vital role in improving the autistic child’s communication skills. In addition to this, it helps in the development of verbal communication skills. For others, using gestures or picture boards is more realistic

• The pictures exchange communication systems

Pecs uses picture symbols to teach communication skills. Autistic children communicate by using picture symbols for conversation. 

Awareness for Autistic oriented design

The study has stressed the importance of including students on the Autism spectrum in general education environments. This inclusion, that is, their integration and participation to attend the same classes with non-disabled students, would not be achieved without providing the necessary support. This support includes a quiet, distraction-free learning environment with sufficient personal space that would allow them to recalibrate and readjust their senses. 

That in addition to the high-interest areas that conform to these students’ statuses, and that would make their inclusion a The various strategies presented in this study reveal the importance of the role of architects in providing these inclusive environments that should guarantee equal opportunities for all society members and help mainstream students with autism into society social mainstream. 

• Raising the awareness of professional architects and designers of the importance of providing inclusive autism-friendly environments, especially educational ones, to prepare the members of this group for better community integration and a higher quality of life.
• It is important to teach the next generation of designers through adjusted curriculum and courses for a specially-abled design perspective.
• Raising community awareness of the importance of autism and architecture.

Case Study: Advanced Autism Center, Egypt 

There is no better way to study a typology of design than a case study. Advanced Autism Center Egypt is located in Cairo, Egypt. Ar Magda Mustafa designed it. Furthermore, Ar. Magda Mostafa designed the spaces for autistic children keeping their behavioral and design concepts in mind. Therefore the spaces are divided purposely into low, high, and transitional stimuli zones. The site is located in Cairo and is surrounded by township and katameta golf tennis. 

The internal spaces are divided as per sensory potential into three groups. The groups of design stimuli are low, high, and transitional spaces. The criteria of stimuli are used in escape space, translational spaces, and sensory zones. The center is placed on the west side of Cairo in a residential area. Low-rise buildings define the character of the area. 

Stimuli are defined as unusual reactions in the respective sensory organs. 

High Stimuli: Sensory information coming from a built environment might be a simple bright color. 

Low Stimuli: In the low stimulus environment project.

Transition space: The sensory garden is organized. Inspiring the different senses — sight, sound, taste, touch, smell. A garden with a play area for physical development. The two zones are connected by a long corridor that provides intimacy to the treatment. This area is the administration department and hydrotherapy. And these areas are under high stimuli.

Hydrotherapy: Inspiring the different senses, sight, sound, taste, touch, and smell. Hydrotherapy can improve social behaviors, and it can aid sensory processing disorders in the central transition nucleus, providing easy access to all the treatment rooms. The structure is divided into four volumes of spaces and has a five-floor height massing. In addition to this, it has a sports center, public relations area, and hostel units.

Design perspective  

Autism spectrum disorder (ASD) is a complex developmental condition involving persistent challenges in social interaction, speech, nonverbal communication, and restricted/repetitive behaviors. Studying the mindset of autistics in itself is a very vast subject; hence the topic limits itself to the study and research of their behavioral aspects in educational environments and environments which help them in rehabilitation. The main perspective of design should be defining quiet spaces, open circulations, and multi-sensory spaces.

The perspective of the design should be:

• To understand the environmental implication for teaching strategies used for children with autism in educational spaces.
• Address their needs and design accommodation based on their behavioral aspects, cultural and social aspects.
• Visual character, spatial sequencing, and it’s quality escape areas clutter-free space color texture materials acoustics. 

https://www.intechopen.com/chapters/42147

https://www.aaed.org/uncategorized/autism-and-architecture/

https://www.archnet.org/publications/9101

https://my.archdaily.com/us/@mark-p/folders/autism

Ar. Ritu Gosavi is a published co-author of the two anthology " A poet's Pulse" and "Slice of life" , graduated from College of Architecture Nasik .A brilliant content writer since 2019 bringing light on social and patriarchal norms through her writing page called "Ruminant". An architect, author, and audacious , a classical and japanese literature lover.

Rethinking Architecture Beyond Buildings

The Evolution of Materials in Architecture

Related posts.

School for Blind and Visually Impaired Children by SEAlab

Chowmahalla Palace, Hyderabad

Sanskar Kendra, Ahmedabad

Project in-depth: The Channel Tunnel (Eurotunnel), UK-France

The Lingaraja Temple, Odisha

Evergreen Line Stations by Perkins and Will

• Architectural Community
• Architectural Facts
• RTF Architectural Reviews
• Architectural styles
• City and Architecture
• Fun & Architecture
• History of Architecture
• Design Studio Portfolios
• Designing for typologies
• RTF Design Inspiration
• Architecture News
• Career Advice
• Case Studies
• Construction & Materials
• Covid and Architecture
• Interior Design
• Know Your Architects
• Landscape Architecture
• Materials & Construction
• Product Design
• RTF Fresh Perspectives
• Sustainable Architecture
• Top Architects
• Travel and Architecture
• Rethinking The Future Awards 2022
• RTF Awards 2021 | Results
• GADA 2021 | Results
• RTF Awards 2020 | Results
• ACD Awards 2020 | Results
• GADA 2019 | Results
• ACD Awards 2018 | Results
• GADA 2018 | Results
• RTF Awards 2017 | Results
• RTF Sustainability Awards 2017 | Results
• RTF Sustainability Awards 2016 | Results
• RTF Sustainability Awards 2015 | Results
• RTF Awards 2014 | Results
• RTF Architectural Visualization Competition 2020 – Results
• Architectural Photography Competition 2020 – Results
• Designer’s Days of Quarantine Contest – Results
• Urban Sketching Competition May 2020 – Results
• RTF Essay Writing Competition April 2020 – Results
• Architectural Photography Competition 2019 – Finalists
• The Ultimate Thesis Guide
• Introduction to Landscape Architecture
• Perfect Guide to Architecting Your Career
• How to Design Architecture Portfolio
• How to Design Streets
• Introduction to Urban Design
• Introduction to Product Design
• Complete Guide to Dissertation Writing
• Introduction to Skyscraper Design
• Educational
• Hospitality
• Institutional
• Office Buildings
• Public Building
• Residential
• Sports & Recreation
• Temporary Structure
• Commercial Interior Design
• Corporate Interior Design
• Healthcare Interior Design
• Hospitality Interior Design
• Residential Interior Design
• Sustainability
• Transportation
• Urban Design
• Host your Course with RTF
• Architectural Writing Training Programme | WFH
• Editorial Internship | In-office
• Graphic Design Internship
• Research Internship | WFH
• Research Internship | New Delhi
• RTF | About RTF
• Submit Your Story

Looking for Job/ Internship?

Rtf will connect you with right design studios.

Building a second career in architecture with Linus Fernström

Stora Höga, Sweden

When professional hockey player Linus Fernström sustained a career-ending injury, he used his long recovery time to pursue a new project: his family’s dream home. He used SketchUp to design his new home — and pave the way for a new career in architecture.

Linus’ family dream home (Photo by Calle Wärnelöv).

Midway through his hockey career, Linus and his family bought a plot with the plan to build a house and live there during the summers when Linus was off from hockey. Before they could finish their plan, Linus was injured and began a lengthy rehabilitation process. Since it would be some time before Linus could be physically active, he turned toward drawing the house his family had planned. He quickly moved from sketches to SketchUp and found not only a new passion but a new career in architecture.

The first project: a dream home

When Linus began designing in SketchUp, he had no training — just a lifelong love of and interest in architecture. He learned about how built structures come together by drawing in SketchUp. His design process involved experimentation, redrawing, deleting and starting over again, refining and adjusting until it was right. During this time, Linus found himself in a mode he recalled from his ice hockey career: a combination of joy and inner motivation.

Early sketches of Linus’ family home. Scroll to see another view.

After he finished his design, Linus had another new skill to learn: creating 2D documentation for permits. He read many books and learned to interpret building regulations, solve accessibility issues, and read site plans, then created 2D drawings in SketchUp. After he received the permits, he worked with a construction engineer to create finalized construction documents for the build.

Linus went to the construction site every day, learning how the drawings he created would dictate the work that the carpenters and construction workers executed. While it only takes seconds in SketchUp to Push/Pull a roof out for a more dramatic overhang, it can create a construction challenge. In situations like these, Linus learned that something that is easy to make in SketchUp may be challenging to build in real life. 

Images showing the SketchUp model and the construction process. Scroll to see another angle.

Since it was his first design project and Linus had no formal training, he and his construction team ran into a few hiccups. Linus also worked through these issues in SketchUp and communicated solutions to the construction team in SketchUp. He learned the value of having detailed construction drawings and gained an understanding that what appears to be simple often requires advanced technical solutions.

“Some architects still draw in 2D, and I don’t understand that at all. If something goes wrong, you have to make many drawings, and it’s so much easier to be understood in 3D.” —Linus Fernström 

Gaining recognition — and a new career

As longtime fans of Husdrömmar, a Swedish architectural design TV show with two million viewers that follows house projects from start to finish, Linus and his family decided to submit their home. He had little expectation that anything would come of it — after all, he wasn’t a professional architect or designer. 

To his surprise, not only did his home get chosen for the show, but the host, Gert Wingårdh, an internationally renowned Swedish architect, ended the episode of Linus and his family with amazing words of encouragement. Wingårdh said Linus’ home was one of the best-executed projects the show had featured and that he believed there would be a big demand for Linus’ designs.

Still of Linus’ family in their home on Husdrömmar.

Wingårdh’s prediction was correct: right after the show aired, Linus started getting calls and texts from people who wanted help with their projects or who wanted to start new projects with him. What began as a way to fill his time while he looked toward an uncertain future became his new career.

Photograph of the completed home.

A grounded approach and an organized workflow

Because of Linus’ lack of formal training, he doesn’t approach projects with any preconceived design ideas in mind. From his years as a hockey player, he brings a team-centered mentality to every project. He relies on understanding the client and reading the landscape over the course of a couple of meetings. For him, the greatest measurement of success on a project is not the creation of an incredible design but a client’s happiness with their new home, giving them what they want but hopefully also what they didn't know they wanted.

He starts projects by situating them in their proper context, using Moasure to take approximate measurements and create a site plan. When he begins drawing in SketchUp, Linus is fastidious about keeping his model organized. 

Modeling in SketchUp is like building a house —if you don't get the fundamentals and organization right from the beginning, you’ll have problems the whole time you build. —Linus Fernström 

When Linus began using SketchUp, he had yet to learn about the universe of SketchUp extensions that could supercharge his workflow. He relied on native tools, which could do almost everything he needed, though some tasks were faster than others. As he learned more about the SketchUp ecosystem, he started incorporating extensions into his workflow, which helped boost his speed, accuracy, and efficiency. Some of his favorite extensions include TopoShaper and Curic Scene Manager . Scene Manager is a must-have for Linus, as he can use up to 200 scenes to visualize everything he needs to know about a project.

For client communication, Linus mainly relies on scenes from SketchUp. Linus grabs models from 3D Warehouse to add furniture and other details to his projects to give his clients a sense of context and scale. The native SketchUp visuals are effective communication tools, but Linus will occasionally make a rendering with Twinmotion for clients who require a more detailed or realistic view of their future home.

Linus also started leveraging LayOut for all of his 2D documentation needs. He loves that he can quickly change his SketchUp model and send clear, up-to-date drawings to project owners and the construction team. The combined visualization power of SketchUp and LayOut helps Linus communicate his designs clearly with all stakeholders and allows for a streamlined workflow with the minimum of tools.

Advice from a self-taught architect 

Linus working in his home. Scroll to see a view from the home’s interior.

When learning about architecture, Linus recommends immersing yourself in studies.

Think about architecture daily and study architecture whenever and wherever you are. If you’re in someone’s home or reading books — think, ‘How was this built? How could it be done differently? What would be the effect of any changes?’ Be curious and dare to ask a lot of questions. —Linus Fernström 

Linus is a big fan of SketchUp’s YouTube channel for learning modeling techniques. He also takes advantage of the helpful and welcoming community in the SketchUp forums . The lack of competition and the willingness of users to share their knowledge is something that Linus describes as the unique "SketchUp spirit."

Linus’ five tips for working in SketchUp

SketchUp is smart. If any task feels cumbersome, there is likely a better solution — just Google it. You often find the answer and think, "Ahh, of course!"

Use shortcuts like double-clicking, Alt, Cmd, or the Shift Key. Most tools perform a specific action that will save you a lot of time when repeating tasks by using these keys.

Linus advises using the measuring tool a lot. Linus’ workflow basically consists of thinking, measuring, and modeling. 

Try to find a working method that suits you and refine it. Create preset templates with tags you mostly use, such as when drawing houses, so you don't have to spend time setting them up for each new project.

When you have some free time, check out SketchUp resources, even if you’re not looking to solve a particular problem. Watching a 15-minute video on YouTube can lead to many new workflow insights. 

Inspired to begin your SketchUp journey? Dive into the project that could change your life with a free trial , or check out our subscription offerings .

Portrait of Linus Fernström, architect.

Connect with Linus on Instagram or visit his website .

Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia

• Original Contribution
• Open access
• Published: 25 September 2021
• Volume 32 , pages 475–490, ( 2023 )

Cite this article

You have full access to this open access article

• David Ariel Sher   ORCID: orcid.org/0000-0003-0528-7904 1 &
• Jenny L. Gibson   ORCID: orcid.org/0000-0002-6172-6265 2  

14k Accesses

15 Citations

25 Altmetric

Explore all metrics

Grunya Efimovna Sukhareva’s seminal role in being the first to publish a clinical description of autistic traits in 1925, before both Kanner and Asperger, has been revealed relatively recently. Nevertheless, Sukhareva’s work is little known and largely unrecognised beyond Russia. Amidst calls for greater recognition of her pivotal contribution in the genesis of autism conceptualisation and categorisation, this article provides a biographical and historical background. Sukhareva’s wide-ranging psychiatric work is adumbrated and her pioneering efforts in conceptualising both schizophrenia and autism are elucidated. The article reflects on possible explanations for the belated and incomplete recognition of Sukhareva’s role. The current article indicates how Sukhareva’s work was ahead of its time in reflecting modern criteria for autism diagnoses and in its focus on female case studies. Sukhareva’s somewhat precarious position as a foremost psychiatrist condemned in the Stalinist years for being anti-Marxist is explicated. The article outlines further directions for academic research on Sukhareva’s work and contributions.

Similar content being viewed by others

The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond

What is autism?

The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

Avoid common mistakes on your manuscript.

Introduction

In the 1960s, Dr Nancy Rollins, an American specialist in child and adolescent psychiatry, perfected her knowledge of the Russian language and Soviet psychiatric literature. Thus armed, she embarked on a 4-month investigative excursion to the USSR to examine Soviet theory, treatment and diagnoses of psychiatric disorders among children and adolescents. She would later present this to a Western audience [ 1 , 2 ]. In Child Psychiatry in the Soviet Union, the literary result of her endeavour, Rollins described encountering Professor Grunya Efimovna Sukhareva in 1968. It seemed that Rollins was deeply moved by this encounter, and she was particularly effusive in her praise of Sukhareva. She wrote that Soviet child psychiatrists, particularly those near Moscow, “tend to follow the grouping of their beloved teacher, Grunya Efimovna Sukhareva.” “The privilege of knowing her” Rollins continued, “was perhaps the most valuable experience I had in the Soviet Union.” Rollins met Sukhareva when she “…was already in her seventies…The qualities I saw in her of warmth, compassion, and wisdom made an enduring impression. The first two were evident in the way in which she handled patients and in the devotion she inspired in her staff, trainees, and former trainees I met in other parts of the country.” Assessing Sukhareva’s psychiatric contributions, Rollins wrote “Her psychiatric interests have been extremely broad. She has made contributions to the organization of psychiatric services, research in schizophrenia and epilepsy, and the training and teaching of child psychiatrists and psychoneurologists” [ 3 , p. 73]. Sukhareva is perhaps now best known as the first academic to delineate clinical portraits of autistic boys in a Russian journal in 1925 [ 4 ] and a German journal in 1926 [ 5 ]. This was some two decades before Kanner and Asperger published their seminal papers on autism [ 6 , 7 , 8 ]. Yet despite this achievement, Sukhareva’s work and papers have remained relatively obscure outside Russia. Scholars have intimated that Sukhareva was ignored and that her articles may have been usurped by others [ 5 , 6 , 9 ]. Others argue that her publications require further historical study [ 10 , 11 , 12 ].

Sukhareva’s work has mainly reached English-speaking audiences through translations of two of her key articles [ 5 , 12 ]. Whilst these are inordinately useful, they were not aimed at providing an account of her life and contributions to psychiatry. An additional paper on Soviet psychiatry and the origins of ‘sluggish schizophrenia’ considered Sukhareva’s writings, but this was not its primary focus [ 13 ]. Similarly, whilst an informative, albeit brief, outline of Sukhareva’s descriptions of autistic male children and a comparison to the DSM-5 has been presented in the Nordic Journal of Psychiatry [ 6 ], this did not aim to provide detailed biographical contextual information or consider Sukhareva’s account of autistic girls and her contributions to understanding schizophrenia. Indeed, the authors called for wider recognition of her achievements. In this context, an English-language composition on Sukhareva’s life, background, and a broader focus on her psychiatric contributions, including both autism and schizophrenia categorisation and conceptualisation is pressingly needed. This paper aims to bridge this literature gap. This paper’s survey of Sukhareva’s work and contributions commenced with a literature search using PubMed, PsycINFO, Google Scholar, the iDiscover University of Cambridge search platform and the University of Oxford’s SOLO search engine (using the words; Sukhareva; Ssucharewa; autism; psychiatry). Whilst the search yielded Sukhareva’s own papers, we discovered very little material in mainstream English-language psychiatric literature on Sukhareva, aside from several exceptions which, as noted above, did not focus on Sukhareva’s overall contribution to psychiatry [ 5 , 6 , 12 , 13 ]. We, therefore, perused Russian language literature concerning Sukhareva. To enhance rigour, the authors cross-checked material gathered from Russian-language publications with a psychology lecturer based in the United Kingdom, who speaks Russian as a first language. The lecturer, who studied clinical psychology at the State University of Saint-Petersburg and now resides in the United Kingdom, specialises in psycholinguistics and social cognition in autism. Her input is noted in the acknowledgements section. To widen the scope of our review of literature on Sukhareva, we also searched for mentions of Sukhareva by other prominent psychiatrists. Scans of Kanner’s papers referring to Sukhareva and Sukhareva’s articles in several journals which have since ceased publication were accessed through librarians at the University of Oxford’s Bodleian Library. A copy of Asperger’s original 1942 Habilitationsschrift was purchased from the Vienna University archives to ascertain whether the thesis cited Sukhareva. As such, the overall method employed can be conceptualised as consisting of three stages: examining Sukhareva’s own publications, exploring primary sources (i.e. literature published whilst Sukhareva was alive that directly pertained to her), and finally, exploring secondary literature on this topic (i.e. articles providing historical accounts of this topic). This approach facilitates synthesis of a range of material in forming a broad account of Sukhareva’s life and contributions. It also affords making suggestions for future research and for accounts which chart the genesis of autism conceptualisation and categorisation.

Sukhareva was born to Chaim Faitelevich and Rakhila Iosifovna Sukharev in Kiev, then part of the Russian Empire, on 11 November 1891 [ 11 ]. In 1915, Sukhareva graduated from the Kiev Medical Institute. She worked in the institute’s epidemiological unit for 2 years. She then served as a psychiatrist at the Kiev Psychiatric Hospital from 1917 to 1921. During this period, in 1919, Sukhareva was also appointed head of the Defectology Department at the Institute of Mental Health of Children and Adolescents [ 14 ]. Sukhareva often held several prominent positions concurrently. In 1921, at age 30, Sukhareva established a school for children affected by psychiatric difficulties (she titled this a ‘hospital-school’) at Moscow’s Psychoneurological Department for Children, which was directed by Professor Mikhail Osipovich Gurevich. Children and adolescents would receive neuropsychiatric treatment here. It appears evident that Gurevich was Sukhareva’s primary mentor [ 11 ]. Gurevich is listed as the ‘supervisor’ on several of Sukhareva’s papers, including on her seminal 1926 paper [ 5 ] and it is clear that they worked closely. Sukhareva also composed sections on ‘schizoid psychopathies’ in a volume edited by Gurevich [ 4 ]. Gurevich had lived in Germany and worked under Kraepelin and Gannushkin [ 11 ]. As shall be seen further in this work, both Gurevich and Sukhareva worked in an increasingly repressive environment and were both forced to endure severe criticism from the Soviet authorities and like-minded academics. Sukhareva’s observations at Moscow’s Psychoneurological Department for Children later resulted in scholarly published articles. From 1928 to 1933, Sukhareva served as an Associate Professor at the First Moscow Medical Institute. She was head of the Psychiatry Department at the Kharkov Psychoneurological Institute from 1933 to 1935. Sukhareva also served as consultant and director at the Kashchenko Moscow Psychiatric Hospital from 1931 to 1951. Her work during this time laid the groundwork for the network of sanatoria and neuropsychiatric institutions across the USSR that Sukhareva would eventually create [ 14 ]. In 1935, Sukhareva successfully defended her doctoral dissertation and established the Child Psychiatry Department at the Central Institute for Postgraduate Medical Education, where she served as head, until 1965. During this time, several generations of child psychiatrists trained under Sukhareva and her colleagues. In 2017, Goryunov, Lazareva and Shevchenko wrote of Sukhareva, “It is difficult to overestimate her contribution to the training of personnel for scientific and medical institutions of the country” [ 14 ] . Apart from supervising several generations of clinical trainees, over 30 doctoral dissertations were completed under Sukhareva’s supervision. Sukhareva was able to instil leadership qualities in students and her disciples went on to found psychiatric schools of their own and occupy headship positions in Russia’s primary psychiatric hospitals and professional bodies.

From 1938 (by which time Sukhareva was already a professor) to 1969, Sukhareva headed the Psychosis Paediatric Clinic at the Russian Soviet Federative Socialist Republic’s (RSFSR) Institute of Psychiatry. During World War II, Sukhareva was evacuated to Tomsk, alongside the staff of Moscow’s Institute of Psychiatry. On the grounds of the Tomsk Psychiatric Hospital, a temporary ‘evacuation hospital’ was co-ordinated. Together with prominent academics and clinicians, Sukhareva treated those suffering from craniocerebral trauma and assisted with diagnosing patients. Several studies on post-traumatic disorders and other psychiatric implications of warfare were published. A paper by Sukhareva based on these experiences was published in English in 1947, and was titled ‘Psychologic disturbances in children during war’ [ 15 ]. In it, Sukhareva referred to the paediatric department of Moscow’s Kashchenko Hospital, whose sanatoria for male and female children were directed by her colleague E.A. Osipova, with whom Sukhareva would later publish several papers [ 15 , 16 , 17 ]. Sukhareva’s paper on psychologic disturbances indicated an increase in psychiatric conditions due to exposure to infection, toxins and trauma caused by the occupying German forces. After her return to Moscow and even following the conclusion of World War II, Sukhareva served as a consultant to the military hospital departments of Moscow’s Kashchenko Psychiatric Hospital, where she also supervised psychiatric research. Even in the increasingly restrictive and often punitive working environment she endured as a psychiatrist in the USSR (as detailed in the sections below), Sukhareva managed to remain in contact with other key pioneers of autism categorisation. Notably, Sukhareva corresponded with Leo Kanner, and as outlined in the coming sections, she succeeded in sending him copies of her seminal scholarly publications [ 18 ]. Sukhareva was a board member of the Soviet Union, Russian Federation and Moscow Society of Neurologists and Psychiatrists and chaired the childhood division of the latter organisation. Sukhareva was awarded the Order of Lenin, the Order of the Badge of Honour, and the title Honourable Scientist of the RSFSR. She never had any children. On 26 April 1981, Sukhareva passed away in Moscow after battling a long illness. At age 90, she was laid to rest at the Vostryakovskoye Jewish cemetery alongside her parents. Her sister, Maria, a paediatric doctor specialising in infectious diseases, is buried in the same cemetery [ 11 ].

The first clinical account of autistic children: Sukhareva’s 1925 paper

Almost 20 years before Kanner and Asperger, Sukhareva published a comprehensive clinical description of six boys aged between 2 and 14 who had spent approximately 2 years at her ‘hospital-school’ and displayed symptoms of what is now titled autism spectrum disorder (ASD). Sukhareva’s article was first published in 1925 in the Russian-language journal Questions of pedology Footnote 1 and child psychoneurology [ 4 ] and in 1926 Sukhareva published a German translation titled Die schizoiden Psychopathien im Kindesalter, in Monatsschrift für Psychiatrie und Neurologie, a German-language psychiatric and neurological journal [ 5 ]. The journal spelled Sukhareva’s name as Ssucharewa, potentially as a Germanic transliteration of the Cyrillic.

In her discussion of ‘schizoid psychopathy’, Sukhareva referred to Ernst Kretschmer and Eugen Bleuler’s conceptions of the phenomenon. In 1959, in a Russian composition which awaits publication into English, Sukhareva opted for the term ‘autistic (pathological avoidant) psychopathy’ rather than ‘schizoid psychopathy’ [ 6 , 19 ]. In later years, psychiatrists used the term schizoid to refer to autistic children in a similar fashion to Sukhareva’s use of the terms. For example, in a substantial volume published in 1995, noted psychiatrist Sula Wolff explained that she used the term ‘schizoid’ broadly, and that such ‘affected children’ were akin to those discovered by ‘Ssucharewa (1926) and Asperger (1944)’ although the term also overlapped with ‘more seriously handicapped [sic]’ categories [ 20 ]. Sukhareva’s use of the term ‘autistic (pathological avoidant) psychopathy’ has echoes in today's debates about the relation of pathological demand avoidance (PDA) to the autism spectrum [ 21 , 22 ], although it does not appear that PDA and ‘autistic (pathological avoidant) psychopathy’ are necessarily synonymous.

Sukhareva’s 1926 article is distinguished by its sympathetic and empathetic tone. She tended to focus on the incremental successes that children made in development since their admission to the institution. Talents and intellectual gifts are stressed in almost all her cases. She noted of a child “He is deeply emotional and very attached to his sister. If a letter from her arrives, he will hide in a corner to read it on his own rather than in the presence of witnesses, waiting patiently until he is left alone. Truthful and pedantic, he always takes a principled viewpoint…He has deep feelings for the beauties of nature…He is musically gifted, has a good ear, a rich musical memory…” Another example: “He is also an able artist, and the drawing teacher, himself an artist, assessed him as artistically highly gifted.” She noted about one child “he writes comprehensive articles for the children’s newspaper, some of which demonstrate excellent literary gifts (a journalistic style with a touch of humour).” Sukhareva had a positive view of the ability of children to adapt successfully if afforded favourable conditions: “The children's psychiatrist, observing sick children in life, in the family and helping them to adapt at school, was able to prove how important the social environment, the correct upbringing and education of a child [is] to stimulate his compensatory opportunities”; this reflected Sukhareva’s evolutionary-biological concept of mental illness. Sukhareva’s 1926 paper balanced these descriptions with comments relaying unconventional behaviour and challenges faced by children (e.g. “Writes notes with absurd contents to his doctors and child carers, put a card into the bag of one of the doctors which reads: “Honorary member of the society of fried dogs”; in another note he announces that he is giving a “lecture on all the nutrients contained in cotton wool!”) [ 5 ].

Notably, in her individual descriptions, Sukhareva summarised two children as ‘autistic’ or featuring ‘autistic reactions.’ In her overall summary, in a section titled ‘An autistic attitude’, she wrote: “All affected children keep themselves apart from their peers, find it hard to adapt to and are never fully themselves among other children…All these children manifest a tendency towards solitude and avoidance of other people from early childhood onwards; they keep themselves apart, avoid communal games…” Sukhareva described children with attributes that modern clinicians would immediately recognise as ‘autistic’. For example, she wrote that five out of the six children she described in 1925 displayed ‘a tendency towards automatism’ and that this manifested “as sticking to tasks which had been started and as psychic inflexibility with difficulty in adaptation to novelty.” She also referred to “a certain flatness and superficiality of emotions” and a “lack of facial expressiveness and of expressive movements” in her overall summary of cases. Referring to unusual talents in her notes on her cases, she also observed a proclivity for repetitious and unusual behaviour. She observed “strong interests…pursued…exclusively” in one of her clinical cases, “frequent repetitions of the same word” and ‘unusual’ sensitivity to noise [ 5 ]. Sukhareva provided details on physiological and anatomical features and her accounts are so meticulously detailed with anecdotal description of notable behaviour/occurrences, that readers are endowed with the sense of being able to recognise the children concerned, should they chance upon them.

Acclaim for the style and ‘modernity’ of Sukhareva’s 1926 paper and her other work

Sukhareva’s 1926 descriptions of autistic children have earned considerable acclaim. Virtually all authors appraising her work offered particularly laudatory comments on its style and it being in accord with modern conceptions of autism. Edinburgh-based psychiatrist Sula Wolff, [ 5 ] who published an English translation of Sukhareva’s 1926, declared that Sukhareva summarised the children’s characteristics ‘admirably’ and that her description was ‘marvellous’ [ 23 ]. Russian psychiatrists at the Mental Health Research Centre, and the Russian Medical Academy of Postgraduate Education, both in Moscow, wrote that Sukhareva’s works “were distinguished by simplicity, clarity, consistency and systematic presentation of the material” [ 14 ]. Manouilenko and Bejerot [ 6 ] affirmed Sukhareva’s descriptions were ‘structured, elegant, detailed’ and ‘vivid’ and Sukhareva’s conception of ways of helping autistic children were strikingly ‘modern’. This paralleled Wolff’s comment that Sukhareva’s discussions before and after the case reports “contain ideas which are strikingly up-to-date”. Interestingly, Wolff's translation of Sukhareva’s paper describes the cases she portrays as having, in summary, a diagnosis of “Personality disorder: schizoid (eccentric)” [ 23 ]. It is worthwhile noting that Sukhareva’s diagnosis has relevance to contemporary research concerning the relationship between autism and borderline personality disorder (BPD), a condition which is more frequently diagnosed in females [ 24 ]. A study titled ‘The overlap between autistic spectrum conditions and borderline personality disorder’ found that similarly to autistic participants, BPD participants featured elevated autistic traits and a powerful urge to systemise, which indicated an overlap between autism and BPD [ 25 ]; this is also reflected in more recent studies [ 26 ]. Similarly, it has been revealed that BPD patients featured higher autistic traits than control group participants and that autistic traits had a significant impact on some clinical features associated with BPD, such as suicidality [ 27 ]. Researchers have argued that difficulties with empathy and theory of mind are overlapping features in BPD and autism [ 28 ]. A modern, impassioned debate on whether BPD should be diagnosed or not [ 29 ] also has resonance in the context of Sukhareva’s summary diagnosis.

Writing in the Journal of Pediatric Neurosciences, Posar and Visconti [ 30 ] declared: “The description of these cases is of an amazing precision and modernity: just think of the fact, for example, that Grunya Efimovna Sukhareva emphasized the importance of the presence of sensory abnormalities, which only recently regained their proper weight in the description of ASD in the DSM-5.”

The striking parallels between Sukhareva’s clinical descriptions and the DSM-5 are outlined point-by-point by Manouilenko and Bejerot [ 6 ]. For example, the DSM-5 specifies social deficits across different contexts should be present for an ASD diagnosis and Sukhareva referred to ‘flattened affective life’ and “Lack of facial expressiveness and expressive movements.” Corresponding to the “stereotyped or repetitive behaviours, restricted interests and sensory sensitivities” in the DSM-5, Sukhareva referred to “Repetitive questioning; talking in stereotypic ways; strong interests pursued exclusively.” Paralleling the DSM-5’s “Hyper- or hypo-reactivity to sensory input”, Sukhareva noted sensitivity to noise and smell. Sukhareva also referred to the child’s parents and other relatives, a nod to a belief, current even then [ 5 ], in the heritability of autism [ 31 ]. Basing herself on histopathological research, Sukhareva indicated her belief in an anatomical substrate of autism; an ‘inborn abnormality’ of the cerebellum, basal ganglia and frontal lobes [ 14 ] Sukhareva’s assertions are now backed by modern neuroimaging research which has linked these brain areas to autism [ 6 , 32 , 33 , 34 ].

Sukhareva’s ‘hospital-school’ featured classes in woodwork, art and gymnastics and children were afforded opportunities to play musical instruments. The school also strove to impart motor and social skills to the students. Teachers worked in close concert with doctors and adopted a highly individualised approach, which considered each child’s condition and diagnosis. Sporting events, matinees and children's concerts were held. Girls were offered occupational therapy in the form of sewing and artistic embroidery, whilst boys were offered carpentry and artwork. Children were empowered with responsibilities, for example some were charged with feeding birds and animals in the hospital-school’s ‘zoo’ corner, whilst others, under specialist guidance, performed agricultural work and tended to flowers. Berries, fruits and vegetables were harvested exclusively by the children, who also undertook record-keeping and distribution to the departments [ 35 ]. The heterogenous array of activities were subsidised by the government and in this context, researchers could observe children in a multiplicity of environments and classes. This undoubtedly assisted Sukhareva in her observations which were meticulously detailed and included comments on children’s familial and scholastic background, relationship with family, idiosyncrasies and talents. The hospital-school served as a conduit for social integration into mainstream schools.

Like her papers on autism, when Sukhareva’s other works were translated into English, they received wide praise. For example, Australian academics praised Sukhareva’s paper ‘The problem of the classification of mental retardation’, published in 1972 [ 36 ]. “We have been impressed with Suhareva’s classification (Suhareva, 1972)” Pitt, Roboz and Plant [ 37 ] declared. Several years later, other Australian researchers opined “…it therefore seems likely that future refinements in classification, leading eventually to international usage, will be along the lines of Suhareva’s (1972) classification with modifications of the type suggested by Pitt et al. (1974)” [ 38 ].

Focus on females

Another way in which Sukhareva’s work was ahead of its time was in its focus on females. Wolff made no mention of Sukhareva’s sequel to the 1926 paper that she translated. In 2020, a paper titled ‘The first account of the syndrome Asperger described? Part 2: the girls’ was published in the Journal of European Child and Adolescent Psychiatry [ 12 ]. Translated by Charlotte Simmonds, the paper was the second part of Sukhareva’s 1926 article ‘Die schizoiden Psychopathien im Kindesalter.’ Part two was titled ‘Die Besonderheiten der schizoiden Psychopathien bei den Mädchen’ (‘The particular features of schizoid psychopathies in girls’) and was published in 1927, in Monatsschrift für Psychiatrie und Neurologie, the same German-language journal as Sukhareva’s seminal 1926 paper. The sequel comprised five case studies of girls with autistic symptoms and discussed sex differences in what is now known as ASD. Simmonds noted that for much of the twentieth century, prominent psychiatrists, such as Asperger and van Krevelen, maintained that autism occurred virtually exclusively in males; Asperger attributed autistic symptoms in girls to postencephalitic conditions. Sukhareva’s arguments in 1927 indicated otherwise and she asserted that often “people who have recovered from encephalitis and have motor skill disorders, for example, display no autistic disposition.” Critically, Simmonds noted how over 90 years ago, Sukhareva delineated the sex differences in autistic symptoms that are only being adumbrated today: “The female differences being described now: greater affect dysregulation, less idiosyncratic interests; and the similarities: autistic disposition, low or absent affective empathy, unimpaired cognitive empathy, systemising thought processes, motor skill deficits, were laid out by Sukhareva in 1927.” In her opening paragraph, Sukhareva noted that her report should be viewed as a continuation of her ground-breaking paper ‘Schizoid psychopathies in childhood’, published in 1925 in Russian [ 4 ] and a year later, in German [ 5 ]. Both papers concern children whom Sukhareva would have had an extended period of time to observe, for 2–4 years. Similar symptoms manifested themselves in the females as in the males. Children featured repetitious, stereotypical behaviour (one answered all questions with the refrain “Don’t ask me, I won’t tell you anyhow, it’s my secret.”) flattened emotion, (“all affective motions remain externally cold and weakly expressed”) and inflexibility (“an idiosyncratic, inflexible, and hyperbolic sense of justice”; “tendency towards autistic responses: introversion, reticence, little sociability”; “emotional coldness and inertia of the affective responses”) [ 12 ].

In concord with modern conceptions of systemisation amongst autistic children [ 39 ], Sukhareva referred to “a definite tendency towards systemisation”, relating that her second female case study answered the question ‘What is a fork?’ with the answer “An object which is made of something such as iron and has several appendages.” Children did not express significant emotion and had difficulty in socialising. ‘Case 3’ was described as “An emotionally flat girl: has no longing for her relatives, no close girl friends…When among children, she keeps herself apart, she doesn’t participate in group play.” ‘Case 4’ related “I have never had strong feelings”, “Nothing particularly moves me”, “I have no close girl friends, I don’t like being close to people” whilst ‘Case 2’ affirmed “I find all girls unpleasant, I don’t love anyone.” Sukhareva noted about her final female case study “Emotional contact cannot be made with her immediately and can only be made with difficulty.” In all these cases, Sukhareva wrote that a diagnosis of schizophrenia could be ‘ruled out’ as schizoid symptomatology had been manifest since birth and had not deteriorated; the significant improvements witnessed in the course of the children’s lives were also not typical of schizophrenia. Sukhareva also viewed an exogenous explanation as most unlikely, for such explanations would not explain the full picture of schizoid psychopathy.

As reflected in modern studies finding that autistic children often do not engage in or comprehend pretend play [ 40 , 41 , 42 ] and often systemise [ 39 ], Sukhareva made the striking observation of her fifth case study “She did not like dolls and broke them to find out what was inside; preferred active games with boys.” Like her account of the male children, Sukhareva’s writing sensitively emphasised the female children’s talents, noting that one child was “musically gifted (ability to compose)” and in her account of her fifth case study “She gives a very fine rendition of emotional experiences on stage; she has a delicate sensitivity for the beauty of nature and books. She has intense intellectual interests which she satisfies by means of reading.”

Notably, Sukhareva did not shun accounts which portrayed her institution’s struggles to effectively assist some of her charges. By honestly relaying unflattering details, an enhanced sense of trustworthiness surrounds her descriptions. For example, Sukhareva wrote of one girl: “She finds everything here very unpleasant, everything here meets with censure…To the question: “What do you dislike?” she gave the answer: “I dislike everything and everyone here is bad.”” Overall, Sukhareva wrote that her studies of both female and male children with schizoid psychopathy revealed two forms of symptomatology; (a) fundamental symptoms of a schizoid “psychopath’s” psyche and (b) accessory symptoms that often appear but not consistently. The basic symptoms were delineated as “1. the autistic attitude, 2. the ambivalence of the thymopsyche, 3. the idiosyncratic thought processes: tendency towards the abstract and formal; automatism, and 4. symptoms of motor skill deficiency: angularity, clumsy movements.” Accessory symptoms included paranoia/persecutory delusions; psychasthenic syndrome (including feeling inferior and insecurity); ‘catatonoid’ symptoms including ‘increased suggestibility’ and/or ‘pronounced negativism’; ‘psychomotor disorders’ including tomfoolery, capriciousness, automatism, and proclivity for stereotyped movements [ 12 ].

Importantly, Sukhareva observed that “The symptom of autistic disposition is equally characteristic of both sexes.” She wrote about differing levels of autism “In three of the cases described, we are talking about a strongly pronounced autism, in two others, it is a low or elective sociability. All these girls appear introverted, reticent, not particularly approachable. All were “loners” from early childhood and mention it themselves” [ 12 ]. Sukhareva wrote that the clinical picture ‘overlapped’ between the sexes in their primary traits. However, she noted that girls with schizoid psychopathology manifested greater affective disturbance than boys; Sukhareva ascribed this to what she termed the more potent and “volatile affectivity of the female psyche.” Girls also manifested greater levels of negativism, with ‘hysteroid’ attributes. Sukhareva indicated that hysterical symptomatology was more common in girls than boys but cautioned against a ubiquitous tendency amongst clinicians to confuse schizoid psychopathy with hysteria; Sukhareva provided a detailed explication for why these should not be conflated or confused. She argued that people with hysteria have an affinity for social settings where they can ‘exhibit’ themselves, whilst the ‘schizoid’ children she described tended to be loners and were not very sociable. She stated that the ‘schizoid’ girls were more independent, were ‘firmer’ in their intentions and were not easily ‘influenced’, as they did not have the required ‘emotional receptivity’. The ‘schizoid’ girls did not have the ‘reactive lability and suggestibility’ of people with hysteria. Additionally, the potent affectivity which Sukhareva deemed characteristic of people with hysteria was not present in the ‘schizoid’ girls, who exhibited a certain ‘coldness’. Finally there were no ‘somatic stigmas’ characteristic of hysteria present in the ‘schizoid’ girls. For example, there were no ‘attacks’ or ‘somatosensory disorders’ [ 12 ]. Conversely, Sukhareva found that schizoid thought patterns were less pronounced in girls, who demonstrated less of a proclivity for abstract and schematic thinking. Similarly, motor skill deficits including facial expressions and expressive movement were less manifest amongst the females [ 12 ]. In 1930, Sukhareva elucidated the life projection for those with schizoid psychopathy in a Russian paper that awaits translation [ 43 ]. In this paper, a triad of key biological insufficiencies were delineated; psychomotor impairment (e.g. unusual angular movements, automatism); emotional impairment (e.g. poor affective attachment to others); and divergence in associative work and thinking (e.g. predilection for abstract thought and inflexibility or rigidity in thinking). It is worthwhile noting that in modern conceptions of autism, it is acknowledged that autistic children can form secure attachments. Indeed 47% of autistic children would be classified as secure when using the Strange Situation Paradigm [ 44 ]. Furthermore, it is now argued that alexithymia, which is associated with difficulty in recognising affective information in others and an inability to express and determine one’s own emotions, is a distinct condition from autism [ 45 ]. Whilst approximately half of autistic people meet the criteria to be deemed alexithymic, an almost equal number do not. Indeed, whilst having socio-emotional difficulties has long been considered a key autistic trait, it is now opined that such difficulties are actually caused by co-occurring alexithymia and not autism [ 46 ].

In the context of Sukhareva’s focus on autistic females, Simmonds has opined that ‘the Anglo-European world’ was left almost 100 years behind Russia in recognising the ‘female autism phenotype’ [ 11 ]. In this vein, it is troubling to note that in the opinion of scholars on this subject, misogyny likely contributed to preventing greater fame for Sukhareva’s pioneering papers [ 6 , 11 ].

Why did Asperger and Kanner not credit Sukhareva?

In his 1944 paper, Asperger wrote “The aim of this paper was to report on a personality disorder already manifest in childhood which to my knowledge has not yet been described” [ 7 ]. Given Kanner’s publication on autistic children in 1943, Uta Frith speculated in a footnote to her translation of Asperger’s work [ 47 ] that although Kanner’s ‘classic’ paper on autism was published a year prior, it “would not have come to Asperger’s attention during the war years.” Frith did not address why no mention was made of Sukhareva’s paper, which was published in one of the very few German journals in the field at that time [ 6 ]. Asperger’s omission has led some organisations operating on behalf of the autistic community to suspect Asperger of disingenuity. For example, the Canadian autistic society, Autism Canada, states in its history of autism; “Sukhareva’s 1925 article is impressive, but was unfortunately overlooked until recently. It is quite possible that the more famous Hans Asperger read it, but he never credited her when he published in 1944 about the autistic traits that would later bear his name” [ 48 ]. It has been stated that Asperger’s original postdoctoral habilitation thesis manuscript (upon which the 1944 paper was based) has not been found [ 49 ]. To preclude the possibility that Asperger cited Sukhareva in his habilitation thesis submitted to Vienna University in 1942 but not in his later 1944 article, the first author of the present article succeeded in obtaining a copy of Asperger’s original 110 page type-script ‘Habilitationsschrift’ with Asperger’s handwritten corrections, from the Vienna University archives. The archivist confirmed that it appeared obvious that the typescript was the basis for Asperger receiving the title ‘Dr. med. Habil’ on 10 March 1943. Although undated, records reveal that Asperger submitted his Habilitationsschrift on 19 October 1942, alongside his application for the ‘Dr. med. Habil’ title. We found that there are some ostensibly minor differences between the journal article and the original Habilitationsschrift, particularly in reference formatting. However, we found that no mention of Sukhareva was present in the text, although Asperger did cite articles from Monatsschrift für Psychiatrie und Neurologie, the same journal in which Sukhareva’s 1926 and 1927 papers were published [ 50 ]. Incidentally, both Sukhareva (in 1925) and Asperger (in 1944) cited Ernst Kretschmer’s well-known work Körperbau und Character [ 51 ].

It was only decades later, in 1996, that Sula Wolff published an English translation of Sukhareva’s 1926 paper in the journal European Child & Adolescent Psychiatry. The article was titled ‘The first account of the syndrome Asperger described?’ [ 5 ]. Wolff’s introduction and title alluded to her view that Asperger must have known about Sukhareva’s work (published in German almost two decades prior to his 1944 paper), and that Asperger appropriated Sukhareva’s work without referencing her. Unconventionally, Wolff concluded her introductory comments with a seemingly purposefully jarring question: “An unanswerable question remains: how was it that Hans Asperger, familiar as he was with Kretschmer’s work, did not apparently know of this paper?” she asked [ 5 ].

“On reading the paper which follows” Wolff declared, “it will at once be clear that the six boys described by Dr Ssucharewa some 70 years ago resemble very closely the children reported on by Asperger in 1944” [ 5 ]. Wolff’s paper was successful in drawing some attention to this issue. For example, in 2001, Eric Fombonne, the associate editor of the Journal of Autism and Developmental Disorders wrote “In 1944, Asperger described a syndrome which has subsequently been given his name, although there is evidence from the earlier European literature that clinical descriptions matching this disorder were available in the 1920s.” He then cited Wolff’s translation of Sukhareva’s 1926 paper [ 52 ]. Similarly, in 2005, Lorna Wing noted Wolff’s translation and wrote that Sukhareva preceded Asperger, by publishing her paper in 1926. Wing then stated “By the chances of history, Asperger’s name rather than Ssucharewa’s has become associated with the ‘‘syndrome’’.” [ 53 ]. In 2015, Manouilenko and Bejerot noted Wolff’s intimation that Asperger was aware of Sukhareva’s article when he wrote his 1944 paper. They indicated that without concrete evidence, this was speculatory [ 6 ]. Nevertheless, Manouilenko and Bejerot similarly implied that Asperger knew of Sukhareva but chose not to credit her. They wrote of the notability that Asperger cited a 1938 paper published in Monatsschrift für Psychiatrie und Neurologie, the same journal as Sukhareva’s 1926 paper and that the journal was one of only a handful of publications in the field at that time, meaning Asperger would likely have read it [ 6 ]. In his history of autism, Adam Feinstein related that psychiatrist Lorna Wing informed him: “No one is totally original….Asperger may have read Eva Sushareva’s [sic] 1926 paper”. Feinstein also noted that it was clear that Sukhareva delineated the key hallmarks of the syndrome many years before Asperger [ 54 ]. In a 2004 article on the history of autism, Wolff once again drew attention to this issue, noting “Asperger’s work was less systematic than Kanner’s.” Pointedly, she then used italicisation to emphasise Asperger’s omission: “ His literature review too was incomplete” Wolff wrote. “He failed to mention the marvellous German account of 6 cases exactly like his own, described by Ssucharewa as “schizoid personality of childhood” in 1926” [ 23 ].

Elsewhere, Manouilenko suggested that Asperger read Sukhareva’s paper but decided not to cite it as he may have been precluded from citing a Jewish author. However, this seems somewhat unlikely, for Sukhareva was cited in German journals and volumes well into the Nazi period and during World War II [ 55 , 56 , 57 , 58 , 59 ]. Manouilenko also offered a more disturbing option, in that Asperger may not have wished to credit a Jewish academic in light of Asperger’s co-operation with Nazi scientists and involvement with the Nazi euthanasia programme [ 9 ]. This refers to Asperger’s signing of papers for at least two disabled children to be transferred to Vienna’s Am Spiegelgrund killing facility ‘hospital’ where they were subsequently killed, alongside his clinical appraisal for the Nazi regime of 35 children from the Gugging psychiatric hospital as being ‘uneducable’ and ‘unemployable’. Such labels were inexorably linked to unwilling ‘euthanasia’ [ 49 , 60 , 61 ]. Manouilenko’s rationale for Asperger’s omission is plausible, for by 1938 Asperger was signing his diagnoses with ‘Heil Hitler!’ and by 1940, Asperger was a member of a number of virulently anti-Semitic bodies, including the National Socialist German Physician’s League, the figurehead of the Nazi Party within the medical profession. Similarly, Asperger superfluously drew attention to his patients’ Jewish lineage, and in 1940 wrote of a boy named Ivo; “The only problem is that the boy is a Mischling of the first degree” Asperger’s unnecessary use of this label—which referred to individuals with one Jewish parent—was an exceedingly perilous and potentially fatal piece of information. Asperger also made some plainly anti-Semitic statements. Writing ‘Mischling’ on the first page of 9-year-old Marie Klein’s diagnostic report, he wrote that the way she spoke contrasted “to her quite Jewish character”. From Asperger’s ward in Vienna, Marie was sent to a children’s home and in February 1940 she was transported to the Wlodawa ghetto, from where children were taken in ‘Aktions’ to be murdered at Sobibor. In 1939, a 12-year-old Jewish girl, Lizzy Hofbauer, was admitted to Asperger’s clinic. Displaying trepidation and speaking of anti-Jewish persecution; (a reality in Nazi-ruled Vienna), Asperger claimed Hofbauer was schizophrenic and noted “For her age and race, conspicuously retarded sexual development”; evidence that he had internalised sexualised Nazi anti-Jewish stereotypes [ 49 , 60 , 61 ]. In this context, Manouilenko’s suggestion does not appear unjustified. Footnote 2

Conversely, Kanner did cite and later write admiringly about Sukhareva [ 18 ]. However, he did not cite Sukhareva in his 1943 paper but in a 1949 paper (Problems of nosology and psychodynamics of early infantile autism [ 62 ]) and even then he did not refer to her 1926 paper but to a paper she had published in 1932 [ 63 ] (Kanner also later cited Sukhareva’s work on schizophrenia [ 64 ]). It has been opined that this does not mean that Kanner’s 1943 paper was inspired by Sukhareva’s work [ 30 ]. In recent years, it has been convincingly argued that both Kanner’s 1943 paper and Asperger’s 1944 paper were based upon the work, expertise, and ideas of Georg Frankl, a more experienced Jewish clinician than Asperger at the Vienna Kinderklinik and those of his wife, Anni Weiss [ 60 , 65 , 66 , 67 ], although Asperger decided not to credit them. These assertions have recently been backed by concrete historical and documentary proof [ 68 , 69 ]. Nevertheless, Sukhareva’s work was published a decade prior to Anni Weiss’ account of children with autistic traits, ‘Qualitative intelligence testing as a means of diagnosis in the examination of psychopathic children’ which only appeared in The American Journal of Orthopsychiatry in 1935 [ 70 ]. Similarly, recent evidence showing that Kanner expressed much admiration for Frankl’s work and intended for Frankl’s paper to be published before his own, in 1943 [ 68 , 69 ] does not affect Sukhareva’s position in publishing the first clinical description of autistic children almost 2 decades prior, in Russian in 1925 [ 4 ] and in German in 1926 [ 5 ].

Sukhareva’s other literary contributions

During the 1930s, Sukhareva developed what was subsequently referred to as an evolutionary biological conception of mental disorders whose significance to modern psychiatry was fully elucidated in Russian by Shevchenko in 2016 [ 71 ]. In her first two editions of ‘Clinical Lectures on Child Psychiatry’ (Volume 1) published in 1939 and 1955, [ 72 , 73 ] Sukhareva provided an explication of essential elements of mental illness in adolescence and childhood. Critically, Sukhareva expounded that alongside the injurious elements typified in mental illness and preventative ‘defence’ mechanisms, progressive elements could also be manifest, which indicated the overarching continued evolution of cerebral and overall development. She also stressed the role of age-related issues and environmental influence and indicated that alterations to an individual’s social environment could improve ‘acquired’ psychopathy in a far more efficacious fashion than constitutional psychopathy [ 19 ]. Sukhareva provided an account of what is now titled attention deficit hyperactivity disorder (ADHD) in modern classifications [ 74 ]. In her discussion of schizophrenic pathology, Sukhareva indicated when defining ‘defect’ (in the context of deficit syndromes), that the concept overlaps with similar terms such as residual states and negative symptoms. This similarity makes defining ‘defect’ a difficult exercise. Defect symptoms included resistance to treatment, a correlation with cerebral structural changes, and an absence of progression of the deficits, which generally remain unchanged. Sukhareva described subtypes of the deficit syndrome as apathetic, apatho-abulic, asthenic and atonic [ 75 , 76 ].

Using the length of exposure to a pathogenic agent and its aetiology as a foundation, Sukhareva categorised oligophrenia (a Soviet term referring to intellectual disability, sometimes referred to in outdated English literature as ‘mental retardation’) into three groups: (a) pathology caused by damage to parents’ reproductive cells; (b) those caused by harmful factors that occurred during the period of intrauterine development; and (c) those caused through damage to the central nervous system in the perinatal period or in the child’s first 3 years [ 36 ]. In her work on epilepsy, Sukhareva provided diagnostic criteria and accounts delineating paroxysmal night terrors, somnambulism, visual hallucinations and other related phenomena [ 72 ]. She also undertook considerable work on mental trauma and pathogenesis of somatogenic and psychogenic psychoses affected by war. Such work included a focus on children with viral diseases, rheumatism and congenital syphilis. Goryunov, Lazareva and Shevchenko [ 74 ] noted that Sukhareva contributed extensively to every branch of child psychiatry and deem her a founder of Russian child psychiatry. She was prodigious and authored over 150 scientific papers, six monographs, and a three-volume collection; ‘Clinical Lectures on Child Psychiatry’, which summarised her research in the field. These were published in 1955 [ 72 ] (first edition 1939 [ 73 ]), 1959 [ 19 ], and 1965 [ 77 ] This was a considerable achievement, considering their publication coincided with a period of Soviet subjugation of psychoanalysis, genetics and cybernetics.

Political context of Sukhareva’s work

In the 1920s and 1930s, Soviet psychiatrists explored pathways for diagnosis of early stages of schizophrenia. Their task was hindered, for schizophrenia had a wide array of potential symptoms, including paranoid thoughts, hallucinations, verbal disorganisation and uncontrolled movement. However, patients might manifest none of these symptoms and still be diagnosed with schizophrenia. In this context, one noted Soviet psychiatrist lamented that whilst other ‘nosological units’ such as paranoia and neurasthenia were well defined and their definitions were still undergoing refinement, the nosological delineations of ‘schizophrenia alone’ seemed to grow incessantly [ 13 , 78 ]. Similarly, schizophrenia’s broad definition made it difficult for psychiatrists to differentiate it from other conditions. Sukhareva’s supervisor in Moscow, M.O. Gurevich, had co-authored a 1928 textbook which defined schizophrenia as “an endogenous disease process characterised by progressive course of development of signs of splitting of the psyche and emotional dullness” [ 79 , 80 ].

Schizophrenia caused great concern amongst Soviet health officials as by 1928 it accounted for one third of all patients in psychiatric hospitals. However, the boundaries of schizophrenia continued to widen. In the early 1930s, Dr Lev Rozenshtein declared he had discovered the existence of a distinct disease entity; mild schizophrenia [ 81 , 82 ]. This pathologized relatively inconsiderable manifestations of anxiety, melancholy and lethargy. Rozenshtein was not alone. P.B. Gannushkin and V.A. Giliarovskii, both influenced by the well-known Russian clinician Sergei Korsakov, included patients without disorganised thinking, delusions, and hallucinations as still being under the umbrella diagnosis of schizophrenia. These patients were situated on the ‘less severe’ side of a schizophrenic ‘continuum’. Mood swings, fixation, or hysteria and a family history of schizophrenia often sufficed for a schizophrenia diagnosis. An article published by Oleg Kerbikov, a researcher working under Gannushkin, earned particular opprobrium amongst Russian psychiatrists for declaring in a chapter of a volume (edited by Sukhareva’s supervisor, M.O. Gurevich) that a patient had schizophrenia without any schizophrenic symptomatology [ 13 , 80 ]. Conversely, the noted Soviet physiologist, Ivan Pavlov championed the notion that schizophrenia could be understood by being affected by the endocrinal system. The head of Leningrad’s Military Medical Academy, V.P. Osipov, espoused this view particularly forcefully [ 13 ].

It was in this confused environment that Sukhareva trained and practised psychiatry at the First Moscow Medical Institute, under Gannushkin, having completed her tenure as head of the child psychiatry department at Kiev’s psychiatric hospital [ 14 ]. Following her accounts of schizoid psychopathy in children, Sukhareva attempted to differentiate between schizoid psychopathy in children and childhood schizophrenia. Sukhareva observed a multiplicity of clinical manifestations and found that ‘simple schizophrenia’ was too crude a diagnostic label to account for the heterogeneity she observed. She found Kraepelin’s focus on process and outcome impractical for young children and that Bleuler’s ‘secondary characteristics’ were not evident. Thus, Sukhareva determined to monitor and measure the severity of onset of schizophrenic symptomatology and the ‘tempo’ of their development [ 13 , 83 , 84 ]. Observing 107 children, Sukhareva determined two discrete forms of schizophrenia amongst the children. One subset of children manifested an unhurried but unremitting prepubescent commencement of schizophrenia. These children had a family history of schizoid psychopathy or schizophrenia, displayed reticence and difficulty in socialisation with peers, featured clumsy movements and were particularly sensitive. Sukhareva labelled this form ‘sluggish’ (or ‘continuous’) schizophrenia and hypothesised that its causation was attributable to hereditary influences. In the second group Sukhareva studied, children featured a delayed onset of symptoms, which were only exhibited during or after puberty. Another dissimilarity to the first group was that the second group’s schizophrenia did not progress at a steady tempo; there was fluctuation between sudden eruption of symptoms and periods of remission. The condition developed suddenly and cataclysmically. Sukhareva labelled this latter form ‘rapid’ (or ‘paroxysmal’) schizophrenia and theorised that it was caused when a child with schizophrenic heredity was exposed to an external factor such as trauma [ 13 , 85 ]. Although Zajicek referred to two varieties of schizophrenia delineated by Sukhareva, Goryunov et al. [ 14 ] stressed a third variant that Sukhareva referred to a mixed form where a ‘sluggish continuous flow’ was evident alongside occasional paroxysmal flare-ups.

Meanwhile, several professors (including A.S. Shmar’ian, whom Sukhareva had worked with in Tomsk) began to severely criticize the status quo of Russian psychiatry. Osipov wrote especially censorious animadversions against Rozenshtein’s ‘mild schizophrenia’ and opined that Rozenshtein had irresponsibly advanced introversion into a condition which had spearheaded countless Soviets being thoughtlessly diagnosed as having ‘schizophrenia’. He postulated that the wide diagnostic latitude which ‘mild schizophrenia’ afforded had led to severe abuse by unethical officeholders, who ensured subordinates whom they had skirmished with were expediently diagnosed with mild schizophrenia [ 13 ].

Zajicek held Sukhareva’s work to be critically important in providing a ‘unified theoretical model’ to chart a path forward for Soviet psychiatry in this highly politicised and fraught juncture of Soviet psychiatry [ 13 ]. In 1935, Sukhareva published the article ‘Towards the problem of the unity of schizophrenia’ [ 13 , 86 ]. Here, she posited that schizophrenia was not an arbitrary umbrella term for several disparate diseases. Rather, she indicated that schizophrenia was a unified, singular category and the heterogeneous array of its forms could be categorised and observed through her approach of monitoring the condition’s tempo, which would reveal the different forms of schizophrenia. Sukhareva’s work was of pivotal importance in synthesising disparate Soviet thought and research indicating the importance of psychological trauma, the patients’ heredity and the endocrine system. It was also acutely needed as it moved away from the divisiveness that Rozenshtein’s mild schizophrenia concept had engendered in Soviet psychiatry.

Nevertheless, Sukhareva faced unenviable challenges, for in preparation for the All-Union Society of Neuropathologists and Psychiatrists Congress in Moscow in 1936, Osipov had commenced efforts to utilise the congress to publicly renounce Rozenshtein’s mild schizophrenia research. Osipov was aided when in the summer of 1936, the Communist Party passed a resolution prohibiting using psychological methods in education and workplaces and thereby effectively terminating psychological research and practise in Russia. Osipov opined that the mild schizophrenia concept was guilty of pathologising minor disturbances as constituting schizophrenia [ 13 ]. As the congress approached, Sukhareva wrote two articles, designated ‘materials for the All-Union Congress’, in which she indicated that her approach of monitoring the pace of schizophrenic development, and determining whether a patient had sluggish or rapid schizophrenia could resolve the lack of consensus regarding whether mild forms of schizophrenia were disparate forms of their more severe counterparts and whether schizophrenia was endogenous or exogenous [ 13 , 87 , 88 ]. The congress was a highly acrimonious event and Osipov devoted time to criticising and repudiating Rozenshtein’s mild schizophrenia concept. Gannushkin and Rozenshtein were no longer alive; they escaped the fate suffered by their colleague, Brukhanskii, who was apprehended by police following the conference and dispatched to the Gulag, where he died in 1944 [ 13 ].

Sukhareva’s sluggish schizophrenia concept remained operative for decades as the standard term for milder, non-pronounced forms of schizophrenia, where it was also evident that ‘the unity’ of the ‘personality and a progredient process’ had suffered disruption [ 13 , 89 ]. Sluggish schizophrenia was subsequently misused to imprison political nonconformists in the USSR following World War II [ 13 ]. Dr Andrei Snezhnevskii, a colleague of Sukhareva’s at the Institute for Advanced Medical Study, championed the use of Sukhareva’s sluggish, rapid and mixed schizophrenia conception and this remained the basis of schizophrenia’s clinical classification amongst Russian psychiatrists for many decades [ 13 , 90 ].

The Pavlovian Sessions

Another historical drama affecting Sukhareva related to the Pavlovian Sessions, held in Moscow in the 1950s. Stalin admired I.P. Pavlov’s higher nervous activity theory [ 91 ]. The view that humans might be moulded by the conditions surrounding them had obvious resonance for Communist ambition and Bukharin duly noted of Pavlov: “Ideologically, he works for us” [ 92 ]. Stalin quickly moved to institutionalise Pavlov’s teachings. As Windholz [ 93 ] argued, Stalin thereby hoped that a “new, tame and self-sacrificing Homo Sovieticus would emerge.” Ironically, Pavlov had been an outspoken critic of Communism. Footnote 3

In 1950, the USSR Academy of Medical Sciences and the USSR Academy of Sciences held a joint session in Moscow, in accord with Stalin’s scheme. The session determined that yearly conferences should be convened to consider issues relating to Pavlov’s work. Thus, a session titled ‘Physiological Teachings of the Academician I.P. Pavlov on Psychiatry and Neuropathology’ was held in Moscow in October 1951. Sukhareva and several other prominent Russian psychiatrists, including Sukhareva’s supervisor Professor M.O. Gurevich and her colleague Professor A.S. Shmar’ian, were severely castigated for holding anti-Marxist views and espousing Western psychiatric theories [ 75 ]. Their work was labelled ‘anti-Marxist’, ‘anti-Pavlovian’, ‘reactionary’ and ‘idealistic’ and they were accused of perniciously impacting Soviet psychiatry. They were compelled to publicly confess that they had erred and were made to solemnly commit to only profess Pavlovian teaching in the future [ 93 ]. Shmar’ian’s school of brain pathology and neuropsychiatry was closed and as a result, Russia went without virtually any neuropsychiatric research for several decades [ 75 ].

Following this thorough excoriation, Sukhareva had cause to be anxious, although it appears that ultimately her career was not substantially damaged. One unverified account relates that in January 1953, after Stalin’s anti-Semitic ‘doctors’ plot’ campaign was in motion, Sukhareva left a large amount of banknotes at her friends, asking them to conceal it, so that her parents might be provided for, should she be arrested by the authorities [ 95 ]. It is also the case that Sukhareva had to self-censor her work and omitted non-Russian authors in the bibliography of her first volume of Clinical Lectures on Developmental Child Psychiatry. Leo Kanner related that in 1955 Sukhareva sent him a copy of this work. “This was during the Stalin regime”, Kanner wrote. “I was, of course, familiar with Dr. SSUCHAREWA’s work and had quoted her repeatedly, especially in connection with her valuable studies of childhood schizophrenia. I knew that she was well acquainted with the international literature. Yet in the 447 pages of text, there was not the slightest hint that anything had been done in the field by anybody not a native of the U.S.S.R….” he declared. “A second, revised edition appeared in 1959”, Kanner continued; “This was after Stalin had left the scene of action and the censors had begun to relent somewhat. This time the bibliography had 230 references; of these, 182 were Russian and 48 originated elsewhere (24 German, 12 French, 4 Swiss, and 2 each American, British, Italian and Austrian). Undoubtedly, Dr. SSUCHAREWA had been aware of those before but, in a somewhat relaxed political milieu, was able to acknowledge this publicly” [ 11 , 18 , 96 ]. Simmonds [ 11 ] observed that Kanner was partially mistaken, as Sukhareva had, in fact, referred to several non-Russian authors in the main body of her work but had not included them in the bibliography, which under the circumstances appears to have been a principled but somewhat hazardous strategy. Footnote 4

Modern recognition

It may be questioned why Sukhareva is only now granularly receiving the wide acclaim that should have followed her initial 1926 publication. Manouilenko and Bejerot [ 6 ] posit that Sukhareva’s gender, her Jewish identity, Russian nationality and Russian and German-language publications were not an efficacious recipe for gaining worldwide attention in the 1920s. Today, it is decried that “despite all” of Sukhareva’s pioneering contributions to understanding autism, her work “remains even today a kind of curiosity and it is only sporadically cited in literature” [ 30 ].

There have been calls from many quarters for greater recognition of Sukhareva’s pioneering role in first providing a clinical account of autistic children in 1926, almost two decades before Kanner and Asperger. Manouilenko and Bejerot [ 6 ] both of the Karolinska Institutet in Stockholm, argued that despite a Russian-language commemorative article appearing on the 120th anniversary of Sukhareva’s birth [ 74 ], much wider acknowledgement of her work is needed. In the Journal of Pediatric Neurosciences in 2017, Dr. Annio Posar and Paola Visconti of the University of Bologna opined “More than 20 years have passed since the release of the English translation of the original paper by Grunya Efimovna Sukhareva (Kiev, 1891–Moscow, 1981) entitled “Die schizoiden Psychopathien im Kindesalter,” but the international literature on autism has not yet given the right acknowledgment to this child psychiatrist who remains still unknown to many authors” [ 30 ].

Posar and Visconti’s letter to the editor made clear that recognition of Sukhareva as being the first to describe autism was necessary. In their composition, titled ‘Tribute to Grunya Efimovna Sukhareva, the woman who first described infantile autism’, it was observed that the ‘official history of autism’ ascribes the first descriptions of individuals who would be diagnosed today with autism spectrum disorder (ASD) to Kanner and Asperger. “However” they wrote, “already in 1926, Grunya Efimovna Sukhareva…who was then active in the Union of Soviet Socialist Republics, had described six boys presenting with a clinical picture that, as for the clinical features and evolution, is fully compatible, according to the modern criteria, with ASD and that today we would call “high functioning.”” Posar and Visconti affirmed that advances in modern understanding of autism present a more convoluted picture than that presented by Sukhareva. Footnote 5 “But”, they asserted, “denying the originality and the accuracy of her report, more than 90 years after its release, would be a historic mistake, which we hope will be not perpetual” [ 30 ].

Certainly, in Russia, academics have written that Sukhareva “is rightfully considered the founder of child psychiatry in our country” [ 14 ]. Today, Sukhareva’s works remain key teaching material for students of child psychiatry in Russia [ 14 , 74 ]. As already indicated, knowledge of her work is slowly spreading beyond the Russian Federation. One notable example is Simmonds’ translation of the 1927 sequel to Sukhareva’s 1926 paper, which provides five clinical case studies of autistic girls [ 12 ]. Beyond literature already adumbrated, international journal articles have recognised Sukhareva as being the first to provide detailed descriptions of children that match today’s conception of ASD [ 65 , 97 , 98 , 99 , 100 , 101 ]. Since 2015, by order of the Moscow Department of Health, the Moscow Scientific and Practical Centre for Mental Health of Children and Adolescents, where Sukhareva worked for 40 years, was renamed the G. E. Sukhareva Scientific and Practical Centre for Mental Health for Children and Adolescents. A large commemorative plaque with a bust of Sukhareva’s profile adorns the building. The institution, which is the oldest of its kind in Russia, refers to Sukhareva as a “child psychiatrist of world importance” [ 35 ]. Alexander Goryunov, head researcher at the department, defined Sukhareva as the “most well-known name in child psychiatry” in Russia [ 9 ].

A paper titled ‘G.E. Sukhareva: a course of life and scientific/pedagogical heritage (to the 125th anniversary of birth)’ appeared in the Russian-language Journal of Neurology and Psychiatry [ 74 ]. It was published in 2017, the year that the Department of Child Psychiatry and Psychotherapy of the Russian Medical Academy of Postgraduate Education marked 80 years since its foundation. That year also marked 125 years since the birth of the founder of the department, G.E. Sukhareva. Several of Sukhareva’s publications have also been translated over several decades into Chinese [ 102 ], English [ 5 , 12 ], Spanish [ 103 ], German [ 5 , 16 , 17 , 58 , 63 , 104 , 105 , 106 , 107 ], Polish [ 108 , 109 , 110 ] and French [ 111 ]. However, it is clear that more work needs to be executed. Translations of Sukhareva’s other publications is one avenue for future endeavours. Greater mindfulness of her wider psychiatric contributions, beyond her critical work on autism, is also needed. Overall, it remains essential for Sukhareva’s position as the first to publish clinical descriptions of autistic children to be more widely recognised. The focus on Kanner and Asperger alone in historical accounts of the genesis of describing, categorising, and naming autism has now been challenged with revelations indicating the pivotal role of Georg Frankl and Anni Weiss in this process. However, it is now equally pressing for Sukhareva’s pioneering contribution to modern understanding of autism to be more broadly acknowledged, for Sukhareva’s pioneering descriptions of autistic traits preceded those of Kanner, Frankl, Weiss, and Asperger by many years. In light of the unacceptable levels of stigma suffered by members of the autistic community, it is perhaps most fitting that the academic to first publish descriptions of autistic characteristics was a beloved female psychiatrist, a researcher who emphasised the manifold talents of her case studies at every opportunity.

Data availability

Not applicable.

Code availability

Pedology was a term current in Russia which referred to a discipline amalgamation of pedagogy, psychology and medicine.

There are further examples of Asperger’s anti-Semitism. Following the Anschluss , Jewish children in non-Jewish foster families were placed in Jewish orphanages and then transported to death camps. In March 1938, Asperger recommended separating a 13-year-old Jewish boy named Alfred from his non-Jewish foster mother -despite his affection for her- and placing him with Jewish foster parents; a highly questionable judgment. For further examples, see Czech [ 49 ], Sheffer [ 60 ] and Sher [ 61 ].

In 1917, Pavlov asked Vladimir Lenin for permission to transfer his laboratory overseas, a request that was refused. In 1923, Pavlov publicly denounced Communism and international Marxism. On Communism, he stated “For the kind of social experiment that you are making, I would not sacrifice a frog’s hind legs!” Three years later, in 1927, he wrote to Joseph Stalin “On account of what you are doing to the Russian intelligentsia—demoralizing, annihilating, depraving them—I am ashamed to be called a Russian!” When Nikolay Bukharin, Russia’s commissar of education, wished to visit Pavlov’s laboratory, Pavlov refused him entry, despite the disbursement of funds to Pavlov’s institution from Bukharin’s office [ 92 , 94 ].

The second book Kanner received was not a second edition of the first book but Volume 2, an entirely new book. In fact, the first book Kanner had received in 1955 was a second edition of the first volume [ 11 ].

In particular, they state intellectual disability is often associated with ASD. It is unclear what is meant by this, for Sukhareva unambiguously referred to intellectual disability in her case studies.

Skolnick A (1974) Child psychiatry in the Soviet Union: preliminary observations. By Nancy Rollins, M.D. Cambridge, Mass.: Harvard University Press, 1972. Slav Rev 33:787

Article   Google Scholar  

Leese SM (1973) Child psychiatry in the Soviet Union: preliminary observations. By Nancy Rollins. Oxford University Press for Harvard University Press, 1972. Br J Psychiatry 123:484–485

Rollins N (1972) Child psychiatry in the Soviet Union: preliminary observations. Harvard University Press, Cambridge

Book   Google Scholar  

Sukhareva GE (1925) Shizoidnyye psixopatii v detskom vozraste [Schizoid personality disorders of childhood]. In: Gurevich MO (ed) Voprosy pedologii i detskoĭ psikhonevrologii, 2nd edn. Zhiznʹ i Znanie, Moscow, pp 157–187

Google Scholar  

Wolff S (1996) The first account of the syndrome Asperger described?: translation of a paper entitled Die schizoiden Psychopathien im Kindesalter by Dr. G. E. Ssucharewa; scientific assistant, which appeared in 1926 in the Monatsschrift für Psychiatrie und Neurologie 60:235–261. Eur Child Adolesc Psychiatry 5:119–132. https://doi.org/10.1007/BF00571671

Article   PubMed   Google Scholar  

Manouilenko I, Bejerot S (2015) Sukhareva—prior to Asperger and Kanner. Nord J Psychiatry 69:1761–1764. https://doi.org/10.3109/08039488.2015.1005022

Asperger H (1944) Die “Autistischen Psychopathen” im Kindesalter. Arch Für Psychiatr Nervenkrankh 117:76–136. https://doi.org/10.1007/BF01837709

Kanner L (1943) Autistic disturbances of affective contact. Nerv Child 2:217–250

Zeldovich L (2018) How history forgot the woman who defined autism. Scientific American. https://www.scientificamerican.com/article/how-history-forgot-the-woman-who-defined-autism/ . Accessed 12 Mar 2021

Vicedo M, Ilerbaig J (2020) Autism in Baltimore, 1938–1943. J Autism Dev Disord. https://doi.org/10.1007/s10803-020-04602-4

Simmonds C (2019) G. E. Sukhareva’s place in the history of autism research: context, reception, translation. PhD dissertation, Victoria University of Wellington. http://hdl.handle.net/10063/8266 . Accessed 12 Mar 2021

Simmonds C, Sukhareva GE (2020) The first account of the syndrome Asperger described? Part 2: the girls. Eur Child Adolesc Psychiatry 29:549–564. https://doi.org/10.1007/s00787-019-01371-z

Zajicek B (2018) Soviet psychiatry and the origins of the sluggish schizophrenia concept, 1912–1936. Hist Hum Sci 31:88–105. https://doi.org/10.1177/0952695117746057

Goryunov AV, Lazareva II, Shevchenko YS (2017) G.E. Sukhareva: a course of life and scientific/pedagogical heritage. Zhurnal Nevrol Psikhiatrii Im SS Korsakova 117:59–63. https://doi.org/10.17116/jnevro20171174159-63

Article   CAS   Google Scholar  

Sukhareva GE (1947) Psychologic disturbances in children during war. Am Rev Sov Med 5:32–37

CAS   PubMed   Google Scholar  

Ssucharewa GE, Ossipowa SW (1926) Materialien zur erforschung der korrelationen zwischen den typen der begabung und der konstitution. Z Für Gesamte Neurol Psychiatr 100:489–528. https://doi.org/10.1007/BF02970937

Ssucharewa GE, Ossipowa EA (1929) Über die Psychopathologie der Tuberkulose bei Kindern. Z Für Gesamte Neurol Psychiatr 119:666–678. https://doi.org/10.1007/BF02863831

Kanner L (1969) The removal of national barriers in child psychiatry. Acta Paedopsychiatr 36:313–317

Sukhareva GE (1959) Klinicheskie lektsii po psikhiatrii detskogo vozrasta. T. II. [Clinical lectures in child psychiatry. Volume 2.]. Medgiz, Moscow

Wolff S, Chick J (1980) Schizoid personality in childhood: a controlled follow-up study. Psychol Med 10:85–100. https://doi.org/10.1017/S0033291700039623

Article   CAS   PubMed   Google Scholar  

Moore A (2020) Pathological demand avoidance: what and who are being pathologised and in whose interests? Glob Stud Child 10:39–52. https://doi.org/10.1177/2043610619890070

Kildahl AN, Helverschou SB, Rysstad AL, Wigaard E, Hellerud JM, Ludvigsen LB et al (2021) Pathological demand avoidance in children and adolescents: a systematic review. Autism. https://doi.org/10.1177/13623613211034382

Wolff S (2004) The history of autism. Eur Child Adolesc Psychiatry 13:201–208. https://doi.org/10.1007/s00787-004-0363-5

Grant BF, Chou SP, Goldstein RB, Huang B, Stinson FS, Saha TD et al (2008) Prevalence, correlates, disability, and comorbidity of DSM-IV Borderline Personality Disorder: results from the Wave 2 National Epidemiologic Survey on Alcohol and Related Conditions. J Clin Psychiatry 69:533–545. https://doi.org/10.4088/JCP.v69n0404

Article   PubMed   PubMed Central   Google Scholar  

Dudas RB, Lovejoy C, Cassidy S, Allison C, Smith P, Baron-Cohen S (2017) The overlap between autistic spectrum conditions and borderline personality disorder. PLoS One 12:e0184447. https://doi.org/10.1371/journal.pone.0184447

Article   CAS   PubMed   PubMed Central   Google Scholar  

Dell’Osso L, Cremone IM, Amatori G, Cappelli A, Cuomo A, Barlati S et al (2021) Investigating the relationship between autistic traits, ruminative thinking, and suicidality in a clinical sample of subjects with bipolar disorder and borderline personality disorder. Brain Sci 11:621. https://doi.org/10.3390/brainsci11050621

Dell’Osso L, Cremone IM, Carpita B, Fagiolini A, Massimetti G, Bossini L et al (2018) Correlates of autistic traits among patients with borderline personality disorder. Compr Psychiatry 83:7–11. https://doi.org/10.1016/j.comppsych.2018.01.002

Vegni N, D’Ardia C, Torregiani G (2021) Empathy, mentalization, and theory of mind in borderline personality disorder: possible overlap with autism spectrum disorders. Front Psychol 12:626353. https://doi.org/10.3389/fpsyg.2021.626353

Campbell K, Clarke K, Massey D, Lakeman R (2020) Borderline personality disorder: to diagnose or not to diagnose? That is the question. Int J Ment Health Nurs 29:972–981. https://doi.org/10.1111/inm.12737

Posar A, Visconti P (2017) Tribute to Grunya Efimovna Sukhareva, the woman who first described infantile autism. J Pediatr Neurosci 12:300. https://doi.org/10.4103/jpn.JPN_46_17

Sandin S, Lichtenstein P, Kuja-Halkola R, Hultman C, Larsson H, Reichenberg A (2017) The heritability of autism spectrum disorder. JAMA 318:1182–1184. https://doi.org/10.1001/jama.2017.12141

Ecker C, Suckling J, Deoni SC, Lombardo MV, Bullmore ET, Baron-Cohen S et al (2012) Brain anatomy and its relationship to behavior in adults with autism spectrum disorder: a multicenter magnetic resonance imaging study. Arch Gen Psychiatry 69:195–209. https://doi.org/10.1001/archgenpsychiatry.2011.1251

Pagani M, Manouilenko I, Stone-Elander S, Odh R, Salmaso D, Hatherly R et al (2012) Brief report: alterations in cerebral blood flow as assessed by PET/CT in adults with autism spectrum disorder with normal IQ. J Autism Dev Disord 42:313–318. https://doi.org/10.1007/s10803-011-1240-y

Suzuki K, Sugihara G, Ouchi Y, Nakamura K, Futatsubashi M, Takebayashi K et al (2013) Microglial activation in young adults with autism spectrum disorder. JAMA Psychiat 70:49–58. https://doi.org/10.1001/jamapsychiatry.2013.272

G. E. Sukhareva Scientific and Practical Centre for Mental Health for Children and Adolescents (2020) Sukhareva Centre History. https://suhareva-center.mos.ru/about/summary/history/ . Accessed 12 Mar 2021

Suhareva GE (1972) The problem of classification of mental retardation. Am J Psychiatry 128(supplement):29–33

Pitt D, Roboz P, Plant E (1974) The classification of mental deficiency. Aust J Ment Retard 33:70–76

Hughes GC, Greenman G (1975) Aetiological factors in mental retardation: a survey of 212 cases. Aust J Ment Retard 3:205–207

Baron-Cohen S (2002) The extreme male brain theory of autism. Trends Cogn Sci 6:248–254. https://doi.org/10.1016/s1364-6613(02)01904-6

Jarrold C (2003) A review of research into pretend play in autism. Autism 7:379–390. https://doi.org/10.1177/1362361303007004004

Chen YL, Fu IN, Liu MR, Yu YT, Li HJ, Tsai CH et al (2020) The relationship of symptom severity and pretend play in children with autism spectrum disorder (ASD). Am J Occup Ther 74:7411500049. https://doi.org/10.5014/ajot.2020.74S1-PO7201

Baron-Cohen S (1987) Autism and symbolic play. Br J Dev Psychol 5:139–148. https://doi.org/10.1111/j.2044-835X.1987.tb01049.x

Sukhareva GE (1930) K probleme struktury i dinamiki detskikh konstitutsionnykh psikhopatiĭ (shizoidnye formy). [On the problem of the structure and dynamics of children’s constitutional psychopathy (schizoid form)]. Zhurnal Nevropatol Psikhiatrii 30:64–74

Teague SJ, Gray KM, Tonge BJ, Newman LK (2017) Attachment in children with autism spectrum disorder: a systematic review. Res Autism Spectr Disord 35:35–50. https://doi.org/10.1016/j.rasd.2016.12.002

Cuve HC, Murphy J, Hobson H, Ichijo E, Catmur C, Bird G (2021) Are autistic and alexithymic traits distinct? A factor-analytic and network approach. J Autism Dev Disord. https://doi.org/10.1007/s10803-021-05094-6

Bird G, Cook R (2013) Mixed emotions: the contribution of alexithymia to the emotional symptoms of autism. Transl Psychiatry 3:e285. https://doi.org/10.1038/tp.2013.61

Asperger H (1991) ‘Autistic psychopathy’ in childhood. In: Frith U (ed) Autism and Asperger syndrome. Cambridge University Press, Cambridge, pp 37–92

Chapter   Google Scholar  

Autism Canada (2020) Autism explained - history of autism. https://autismcanada.org/autism-explained/history-of-autism/ . Accessed 12 Mar 2021

Czech H (2018) Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Mol Autism 9:1–43. https://doi.org/10.1186/s13229-018-0208-6

Asperger H (1942) Habilitationsschrift „Die „Autistische Psychopathen“ im Kindesalter“. Vienna University Archives, Medizinische Fakultät, Sonderreihe Habilitationsschriften

Kretschmer E (1921) Körperbau und Character. Untersuchungen zum Konstitutionsproblem und zur Lehre von den Temperamenten. Springer, Berlin

Fombonne E (2001) Ask the editor. J Autism Dev Disord 31:363–364. https://doi.org/10.1023/A:1017311823521

Wing L (2005) Reflections on opening Pandora’s Box. J Autism Dev Disord 35:197–203. https://doi.org/10.1007/s10803-004-1998-2

Feinstein A (2010) A history of autism: conversations with the pioneers. Wiley-Blackwell, Chichester

Barglowski D (1934) Beruf, Trieb und Körperbau: Ein Beitrag zur Kretschmerschen Lehre von den Konstitutionstypen. Z Für Gesamte Neurol Psychiatr 150:122–145. https://doi.org/10.1007/BF02890901

Kloos G, Näser E (1938) Die psychische Symptomatik der Lungentuberkulose. Beitr Zur Klin Tuberk Spezifischen Tuberk-Forsch 91:379–410. https://doi.org/10.1007/BF02143267

Luxenburger H (1939) Die Vererbung der psychischen Störungen. In: Bumke O, Ewald G, Haug K, Luxenburger H, Scheid F (eds) Handbuch der Geisteskrankheiten. Springer, Berlin, pp 1–133. https://doi.org/10.1007/978-3-642-47333-3_1

Ssucharewa GE (1928) Körperbau, Motorik und Charakter der Oligophrenen. II. Mitteilung. Untersuchungsobjekt: Mädchen. Z Für Gesamte Neurol Psychiatr 114:22–37

Luxenburger H (1939) Erbbiologie und Erbpathologie Nervöser und Psychischer Ƶustände und Funktionen. In: Boeters H, Brugger C, Conrad K, Fischel W, Gottschaldt K, Gregor A et al (eds) Springer, Berlin. https://doi.org/10.1007/978-3-642-90906-1_2

Sheffer E (2018) Asperger’s children: the origins of autism in Nazi Vienna, 1st edn. W.W. Norton & Company, New York

Sher DA (2020) The aftermath of the Hans Asperger exposé: implications for psychologists. Psychol 33:76–79. https://thepsychologist.bps.org.uk/volume-33/september-2020/aftermath-hans-asperger-expose

Kanner L (1949) Problems of nosology and psychodynamics of early infantile autism. Am J Orthopsychiatry 19:416–426. https://doi.org/10.1111/j.1939-0025.1949.tb05441.x

Ssucharewa G (1932) Über den Verlauf der Schizophrenien im Kindesalter. Z Für Gesamte Neurol Psychiatr 142:309–321. https://doi.org/10.1007/BF0286613

Kanner L (1971) Childhood psychosis: a historical overview. J Autism Child Schizophr 1:14–19. https://doi.org/10.1007/BF01537739

Robison JE (2017) Kanner, Asperger, and Frankl: a third man at the genesis of the autism diagnosis. Autism 21:862–871. https://doi.org/10.1177/1362361316654283

Baron-Cohen S, Klin A, Silberman S, Buxbaum JD (2018) Did Hans Asperger actively assist the Nazi euthanasia program? Mol Autism 9:28. https://doi.org/10.1186/s13229-018-0209-5

Silberman S (2016) Neurotribes: the legacy of autism and how to think smarter about people who think differently. Allen & Unwin, Crows Nest

Muratori F, Calderoni S, Bizzari V (2020) George Frankl: an undervalued voice in the history of autism. Eur Child Adolesc Psychiatry. https://doi.org/10.1007/s00787-020-01622-4

Muratori F, Bizzari V (2019) Autism as a disruption of affective contact: the forgotten role of George Frankl. Clin Neuropsychiatry 16:127–132

Weiss AB (1935) Qualitative intelligence testing as a means of diagnosis in the examination of psychopathic children. Am J Orthopsychiatry 5:154–179. https://doi.org/10.1111/j.1939-0025.1935.tb06338.x

Shevchenko YuS (2016) Evolyutsionno-biologicheskaya kontseptsiya G.Ye. Sukharevoy (nazad v budushcheye). Sbornik tezisov: Vserossiyskaya nauchno-prakticheskaya konferentsiya ‘Psikhiatriya — lyubov’ moya!’, posvyashchennaya pamyati professora Bukhanovskogo Aleksandra Olimpiyevicha i 25-letiyu Lechebno-Reabilitatsionnogo Nauchnogo Tsentra ‘Feniks’, 23—24 sentyabrya 2016 g. Rostov-na-Donu. [The evolutionary biological concept of G.E. Sukhareva (back to the future). Collection of abstracts: All-Russian scientific and practical conference ‘Psychiatry - my love!’, Dedicated to the memory of Professor Alexander Olimpievich Bukhanovsky and the 25th anniversary of the Treatment and Rehabilitation Scientific Center ‘Phoenix’, 23-24 September 2016 Rostov-on-Don]. In Rostov-on-Don, pp 685–689

Sukhareva GE (1955) Klinicheskie lektsii po psikhiatrii detskogo vozrasta T.I. [Clinical lectures on childhood psychiatry Volume 1], 2nd edn. Medgiz, Moscow

Sukhareva GE (1939) Klinicheskie lektsii po psikhiatrii detskogo vozrasta T.I. [Clinical lectures on childhood psychiatry Volume 1], 1st edn. Medgiz, Moscow

Goryunov AV (2012) G.Ye. Sukhareva (k 120-letiyu so dnya rozhdeniya) [G.E. Sukhareva (the 120th anniversary of birth)]. Zhurnal Nevrol Psikhiatrii Im SS Korsakova 112:67–71

Lavretsky H (1998) The Russian concept of schizophrenia: a review of the literature. Schizophr Bull 24:537–557. https://doi.org/10.1093/oxfordjournals.schbul.a033348

Sukhareva GE (1933) K probleme defektnosti pri miagkikh formakh shizofrenii [On the problem of defectiveness in mild forms of schizophrenia]. Nevropatol Psikhiatriia Psikhogigiena 2:24–38

Sukhareva GE (1965) Klinicheskie lektsii po psikhiatrii detskogo vozrasta. T. III. [Clinical lectures in child psychiatry. Volume 3.]. Medgiz, Moscow

Kannabikh IuV (1934) K istorii voprosa o miagkikh formakh shizofrenii [Toward a history of the question of mild forms of schizophrenia]. Sov Nevropatol Psikhiatriia Psikhogigiena 3:6–13

Gurevich MO, Sereiskii MI (1928) Uchebnik psikhiatriia [Textbook of psychiatry]. Gosizdat, Moscow

Kerbikov OV (1933) O gruppe shizofrenii, tekushchikh bez izmeneniia kharaktera’ [Regarding a group of schizophrenias which develop without change of character]. In: Gannushkin PB, Giliarovskii VA, Gurevich MO (eds) Sovremennye problemy shizofrenii [Modern problems of schizophrenia]. Medgiz, Moscow, pp 97–101

Rozenshtein LM (1933) Problema miagkikh form shizofrenii [The problem of a mild form of schizophrenia]. In: Gannushkin PB (ed) Sovremennye problemy shizofrenii [Modern problems of schizophrenia]. Glavlit, Moscow, pp 86–96

Zajicek B (2014) Soviet madness: nervousness, mild schizophrenia, and the professional jurisdiction of psychiatry in the USSR, 1918–1936. Ab Imp 4:167–194

Sukhareva GE (1933) Osobennosti techeniia shizofrenii v detskom vozraste [Particularities in the course of schizophrenia in childhood]. In: Gannushkin PB (ed) Sovremennye problemy shizofrenii [Modern problems of schizophrenia]. Medgiz, Moscow, pp 71–82

Sukhareva GE (1935) Osobennosti struktury defekta pri razlichnykh formakh techeniia shizofrenii (na detskom i podrostkovom materiale) [Particularities of the structure of defect in various forms of the course of schizophrenia (based on child and adolescent material)]. Nevropatol Psikhiatriia Psikhogigiena 4:57–62

Sukhareva GE, Shur IV (1935) Kliniko-psikhopatologicheskie osobennosti vialo tekushchei shizofrenii (na podrostkovom materiale) [Clinical-psychopathological particularities of sluggish schizophrenia (based on adolescent material)]. Nevropatol Psikhiatriia Psikhogigiena 4:1–14

Sukhareva GE (1935) K probleme edinstva shizofrenii [Towards the problem of the unity of schizophrenia]. Sov Psikhonevrologiia 11:122–398

Sukhareva GE (1936) O nekotorykh diskussionnykh problemakh v oblasti shizofrenii’ [Concerning several problems for discussion in the area of schizophrenia]. Nevropatol Psikhiatriia Psikhogigiena 5:1435–1442

Sukhareva GE (1936) O nekotorykh prichinakh chrezmernogo rasshireniia diagnostiki shizofrenii [Regarding several causes of the extreme expansion of the schizophrenia diagnosis]. Nevropatol Psikhiatriia Psikhogigiena 5:1917–1924

Perel’man AA (1944) Shizofreniia: Klinika, etiologiia, patogenez i lechenie [Schizophrenia: clinical portrait, etiology, pathogenesis and treatment]. Tomsk Med Inst Im V M Molotova 127–128

Nadzharov RA (1972) Formy techeniya shizofrenii [Forms of the course of schizophrenia]. In: Snezhnevskii AVM (ed) Shizofreniya: Mul’tidistsiplinarnoye issledovaniye [Schizophrenia: a multidisciplinary study]. Meditsina, Moscow, pp 31–76

Grimsley DL, Windholz GL (2000) The neurophysiological aspects of Pavlov’s theory of higher nervous activity: in honor of the 150th anniversary of Pavlov’s Birth. J Hist Neurosci 9:152–163. https://doi.org/10.1076/0964-704x(200008)9:2;1-y;ft152

Todes DP (1995) Pavlov and the Bolsheviks. Hist Philos Life Sci 17:379–418

Windholz G (1999) Soviet psychiatrists under Stalinist duress: the design for a ‘new Soviet psychiatry’ and its demise. Hist Psychiatry 10:329–347. https://doi.org/10.1177/0957154X9901003904

Horsley Gantt W (2020) Ivan Pavlov. In: Encyclopædia Britannica. https://www.britannica.com/biography/Ivan-Pavlov . Accessed 12 Mar 2021

Jewish News (2016) Jewish genius: Grunya Sukhareva, the discoverer of child autism. Jewish News. https://jewishnews.com.ua/en/en-science/jewish-genius-grunya-sukhareva,-the-discoverer-of-child-autism . Accessed 12 Mar 2021

Kanner L (1960) American Child Psychiatry, Ltd.? Am J Psychiatry 116:1040–1041

Chereneva EA, Stoyanova IY, Belyaeva OL (2019) Current approaches to differential diagnostics of autism spectrum disorders and similar conditions. J Sib Fed Univ Humanit Soc Sci. https://doi.org/10.17516/1997-1370-0475

Jalal Al Mosawi A (2019) Heller syndrome in two Iraqi children. OA Text 5:1–3. https://doi.org/10.15761/CRT.1000271

Posar A, Visconti P (2018) Infantile autism and Mitteleuropa. Türk Pediatri Arş 53:271–272. https://doi.org/10.5152/TurkPediatriArs.2018.18065

Gillberg C, Hellgren L (2004) Psychiatry of childhood and adolescence (Russian translation). GEOTAR-Med, Moscow

Tebartz van Elst L, Pick M, Biscaldi M, Fangmeier T, Riedel A (2013) High-functioning autism spectrum disorder as a basic disorder in adult psychiatry and psychotherapy: psychopathological presentation, clinical relevance and therapeutic concepts. Eur Arch Psychiatry Clin Neurosci 263:189–196. https://doi.org/10.1007/s00406-013-0459-3

Sukhareva GE (1958) 儿童精神病学临床讲义.第一册. Г.E. 苏哈列娃 著 沈渔邨 许迪 译 朱滨生 校 [Clinical lectures in child psychiatry. Vol. 1]. Remin Weisheng Chubanshe, Beijing

Sukhareva GE (1971) El problema de la clasificación del retardo mental [The problem of mental retardation classification]. Bol Oficina Sanit Panam 71:157–163

Ssucharewa GE (1927) Die Besonderheiten der schizoiden Psychopathien bei den Mädchen. Monatsschrift Für Psychiatr Neurol 62:171–185

Ssucharewa GE (1928) Zur Klinik der Psychopathien im Kindesalter (Zykloide Formen). Monatsschrift Für Psychiatr Neurol 67:86–126. https://doi.org/10.1159/000165930

Ssucharewa GE, Schenfil IB (1929) Der infantil-grazile Körperbautypus und seine somato-psychischen Besonderheiten. Z Für Gesamte Neurol Psychiatr 119:613–630. https://doi.org/10.1007/BF02863826

Ssucharewa GE (1930) Zur Frage der epileptoiden Psychopathien: Begriffsbestimmung und Abgrenzung am Kindermaterial. Z Für Gesamte Neurol Psychiatr 123:626–645. https://doi.org/10.1007/BF02865521

Suchariewa GE (1958) Psychiatria wieku dziecięcego: wykłady kliniczne. T. 1. [Clinical Lectures in Child Psychiatry. Vol. 1]. In: Wilczkowski E, Pogorzelski W (eds) Pogorzelski W, Flatau H, Sobolewski E (trans) Państwowy Zakład Wydawnictw Lekarskich, Warsaw

Suchariewa GE (1969) Psychiatria wieku dziecięcego : klinika oligofrenii [Childhood psychiatry: a clinical picture for oligophrenia]. In: Andrzejewska E, Traczyńska-Kubin H (trans) Państwowy Zakład Wydawnictw Lekarskich, Warsaw

Suchariewa GE (1965) Stany reaktywne i psychopatie w klinice dziecięcej [Reactive states and psychopathies in a children’s clinic]. Flatau H (trans) Państwowy Zakład Wydawnictw Lekarskich, Warsaw

Andronikof A, Fontan P (2016) Grounia Efimovna Soukhareva: la première description du syndrome dit d’Asperger. Neuropsychiatr Enfance Adolesc 64:58–70. https://doi.org/10.1016/j.neurenf.2015.07.007

Download references

Acknowledgements

The authors would like to acknowledge critical assistance provided by Dr Ekaterina Ostashchenko, former postdoctoral researcher at the University of Cambridge and now a lecturer in psychology at Manchester Metropolitan University, with expertise in psycholinguistics and social cognition in autism. Dr Ostashchenko checked sections of this paper drawn from the Russian-language literature and also reviewed Russian transliteration. Thanks are due to Richard Turner at Green Templeton College Library and librarians at the Bodleian Library, University of Oxford, for helping locate articles written by Sukhareva in journals which have since ceased publication. The authors also acknowledge Thomas Maisel at the University of Vienna archives, Kathy Lafferty and Becky Schulte of the Spencer Research Library, University of Kansas, and Christopher Henry, Christine Ruggere, and Will Bryant of the Welch Medical Library at Baltimore’s John Hopkins University for their help in addressing enquiries and locating archive material. Thanks are due to Professor Jimmy Potash and Professor James Harris, both of John Hopkins University, for directing our attention to important material concerning autism history.

The research was not supported by funding.

Author information

Authors and affiliations.

Department of Psychiatry, Warneford Hospital, University of Oxford, Oxford, OX3 7JX, UK

David Ariel Sher

Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge, CB2 8PQ, UK

Jenny L. Gibson

You can also search for this author in PubMed   Google Scholar

Contributions

All authors contributed to the study.

Corresponding author

Correspondence to David Ariel Sher .

Ethics declarations

Conflict of interest.

The authors declare that they have no conflict of interest.

Ethical approval

Not applicable. The manuscript does not contain clinical studies or patient data.

Consent to participate

Consent for publication, rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ .

Reprints and permissions

About this article

Sher, D.A., Gibson, J.L. Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia. Eur Child Adolesc Psychiatry 32 , 475–490 (2023). https://doi.org/10.1007/s00787-021-01875-7

Download citation

Received : 22 April 2021

Accepted : 12 September 2021

Published : 25 September 2021

Issue Date : March 2023

DOI : https://doi.org/10.1007/s00787-021-01875-7

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Schizophrenia
• Find a journal
• Publish with us
• Track your research

• skip navigation
• Privacy Policy
• Accessibility
• search search

• Dissertations in Progress
• Study and Teaching
• International
• Research Projects
• Habilitations
• Publications
• saai | Southwest German Archive for Architecture and Civil Engineering
• Doctoral Convention
• Doctoral Colloquium
• Dissertations

Dissertations in progress

Mrs. Susanne Gerstberger Working title: Biosphere + City Supervisor: Prof. Henri Bava

Mr. Michael Kleber Working title: "Studies on user comfort under warm and humid indoor conditions" Supervisor: Prof. Andreas Wagner

Mr. Seyed Mohammad Hooshmad Working title: "Investigation of the Effect of Radiant Heat Flux on Thermal Sensation and Thermal Comfort". Supervisor: Prof. Andreas Wagner

Mr. Kay Simon Sanvito Working title: "Digital fabrication of mycelium-based alternative construction materials". Supervisor: Prof. Dirk Hebel

Ms. Stephanie Schüssele Working title: "Computer games as works of art". Supervisor: Prof. Martin Papenbrock

Mr. Maurice Nitsche Working title: "Infra x Typos - The Emergence of Architectural and Urban Typologies through New Forms of of mobility and their infrastructure". Supervisor: Prof. Ludwig Wappner

Ms. Conny Hansel Working title: "More Space for Time - How and to what extent can the spatial planner make use of an extended concept of time and contribute to an urban planning that is appropriate to space and time?" Supervisor: Prof. Markus Neppl

Ms. Carina Lübben Working title: "The Concept of Magic in the Works of François Boucher. Images between Enlightenment and Rococo." Supervisor: Prof. Oliver Jehle

Ms. Anna Keitemeier Working title: "Architectural Boundaries and Thresholds as a Negotiation of Access and Control in Public Space. Space. A study of contemporary urban parks in France and Germany." Supervisor: Prof. Henri Bava

Mr. Arturo Romero Carnicero Working title: "Metropolitan borderscapes." Supervisor: Prof. Henri Bava

Mr. Stefan Riekeles Working title: "Pictorial spaces and their construction in Japanese anime films". Supervisor: Prof. Inge Hinterwaldner

Ms. Daniela Schneider Working title: "Influence of joining techniques on raw material values and recycling of buildings". Supervisor: Prof. Dirk Hebel

Ms. Nora Bergbreiter Working title: "Electric waste as a material in art". Supervisor: Prof. Inge Hinterwaldner

Mrs. Sandra Böhm Working title: "The potential of biogenic by-products as raw materials for the production of building materials". Supervisor: Prof. Dirk Hebel

Ms. Tamara Kessel Working title: "Autism-friendly accessibility planning and building - Inclusive school environments for people with Autism" Supervisor: Prof. Riklef Rambow

Ms. Veronika Hirth Working title: "New Materialism. The ecological avant-garde and the art of the Pre-Raphaelites". Supervisor: Prof. Oliver Jehle

Mr. Daniel Lauterkorn Working title: "Development of a parametric-associative modeling approach for the automated construction of of spatial frameworks in the context of historical timber structures". Supervisor: Prof. Matthias Pfeifer

Mr. Iman Baratvakili Working title: "Exploring the strategies in transportation infrastructure through urban design to prevent cyberattack: A case study in Berlin" Supervisor: Prof. Barbara Engel

Mr. Hee Jae Lee Working title: "Korean Models of Micro-living and Urban Sharing Space: A Potential of Housing Promotion for Low-income and Single-person Households in Seoul, South Korea".  Supervisor: Prof. Barbara Engel

Mr. Gregor Jonas Brundke Working title: "YouTube as an archive of architectural references". Supervisor: Prof. Riklef Rambow

Ms. Hannah Knoop Working title: "Supranational Architectures Supervisor: Prof. Georg Vrachliotis

Ms. Maria Paula Alfonso Working title: "Development of a Data Model to describe faults in the operation of building services using a BIM approch" Supervisor: Prof. Petra von Both

Ms. Juha Lee Working title: "Biological Robotism and Nam June Paik". Supervisor: Prof. Inge Hinterwaldner

Mr. Andreas Rauland Working title: "Chances and risks for the urban development of the cities on the river by a touristic development of the river cruise". Supervisor: Prof. Markus Neppl

Mrs. Judith Rehermann Working title: "Hans Baldung Grien:Lot and his daughters, around 1535/40". Supervisor: Prof. Oliver Jehle

Ms. Hale Tugcin Kirant Working title: "Analysis of the Dominant Radiation Effect on Thermal Sensation and Thermal Comfort" Supervisor: Prof. Andreas Wagner

Ms. Camila Chagas Anchieta Grassi Working title: "Algorithm to simulate occupant behavior in mixed-mode office buildings". Supervisor: PD Marcel Schweiker

Ms. Tahereh Mallahnia Working title: "Modelling of BDP based on C2C". Supervisor: Prof. Petra von Both

Ms. Marion Kohl Working title: "The stock exchange as a pictorial motif in Dutch architectural painting of the 17th century, taking into account the economic and social historical context". Supervisor: Prof. Martin Papenbrock

Ms. Barbara Zak Working title: Perception and evaluation of contemporary architecture by architects and non-architects and their influence by communication Supervisor: Prof. Riklef Rambow

Mr. Jean Zino Working title: Reclaiming the potentials of streets through imagining a new urban mobility paradigm in Beirut Supervisor: Prof. Barbara Engel

Mr. Qixin Li Working title: "Research on new rural regionally appropriate design in Shandong Province in the context of China's rural revitalization strategy." Supervisor: Prof. Barbara Engel

Ms. Mai Ahmed Working title: Places Identification in Cyberspace Supervisor: Prof. Markus Neppl

Mr. Jin Chen Working title: Typological Research of Industrial Building Supervisor: Prof. Walter Nägeli

Mr. André Freise Working title: "Friedrich Weinbrenner - Urban Planning and Building Design“ Supervisor: Prof. Walter Nägeli

Ms. Romina Paula Rissetto Working title: "Assessment of individual occupants' expectations in office buildings and its impact on the use of personalized comfort systems" Supervisor: PD Dr. Marcel Schweiker

Mr. Roman Schallon Working title: "città di fondazione" - urban & architectural structures and typologies in Italy in the "Ventennio nero" impact, aftermath - presence Supervisor: Prof. Ludwig Wappner

Ms. Tabea Obergfell Working title: "Long-term stability of phase change materials in building applications and their benefits -.Do they deliver what their manufacturers promise? Supervisor: Prof. Andreas Wagner

Mr. Nikolas Rogge Working title: "Transformation and identity of public spaces in East German large housing estates". Supervisor: Prof. Barbara Engel

Ms. Masha Bagheri Working title: Facts and myths of a green utopia: Examining the social sustainability in German garden cities, Karlsruhe as case study Supervisor: Prof. Joaquin Medina-Warmburg

Ms. Niku Khaleghi Working title: "PhD Proposal Assessing Urban Public Life to Create Liveable Public Spaces. Case Study: Historic Core of Tehran Supervisor: Prof. Barbara Engel

Mr. Max Haug Working Title: "Agility in Urban Development - How Agile are German Cities Prepared for the Challenges of the future?" Supervisor: Prof. Markus Neppl

Mr. Steffen Becker Working title: "What is a neighborhood? The neighborhood as a spatial unit in the planning level". Supervisor: Prof. Markus Neppl

Ms. Anica Nießner Working title: "Graffiti and inscriptions in Dutch church interiors of the 17th century (art history)". Supervisor: Prof. Martin Papenbrock

Mrs. Annika Nasz Working title: "Images of excessive cruelty? Slave representation between suffering and pity". Supervisor: Prof. Oliver Jehle

Ms. Maria Deeb Working title: "Kontantin Melnikov Architect" Supervisor: Prof. Joaquin Medina Warmburg

Ms. Michaela Mansuroglu Working title: "Hermeneutics and reception aesthetics" Supervisor: Prof. Martin Papenbrock

Copyright Date

Date of award, rights license, degree discipline, degree grantor, degree level, degree name, anzsrc type of activity code, victoria university of wellington item type, alternative language, victoria university of wellington school, usage metrics.

• Architectural design

Dogchitecture: WE Architecture Designs a Center That Challenges Traditional Animal Shelters