The article is a presentation of a research project, the implementation of which began in 2023 in Poland at the Nicolaus Copernicus University (NCU) in Toruń. The research project is focused on high-functioning autistic students who decided to study at NCU and at the University of Gdańsk (UG). Access to higher education for autistic persons is problematic not only in Poland (Elias&White, 2018). It is global and so far there are no solutions that would eliminate the issue of unavailability of universities for this social group. Anderson et al. (2019) emphasize that the research analyses the support provided to autistic students to a small extent, and the quality of that research is questionable. Cai and Richdale (2016) come to similar conclusions, pointing to the lack of research exploring students’ educational experiences and needs of students during the learning process in higher education. The research designed by the Polish research team from the NCU in Toruń in the project called "Diverse minds - studying with ASD" fills this gap (Accardo et al., 2019; Ledford et al., 2021; Viesel et al., 2021). The team implementing the project consists of persons working at NCU and UG. Among them are: special educator, sociotherapist, cognitive scientist, psychologist, physicist, IT specialist, statistical analyst, and autistic students and another. The team is interdisciplinary as it includes scientists representing various scientific disciplines (special pedagogy, psychology, cognitive science, applied computer science, physics mathematics, and statistics) and integral, because the team consists of persons representing various parts of the academic community (research and teaching staff, student and statistical analyst). The team made sure that the nature of the research work is innovative, as there is a lack of reliable research on studying autistic persons in higher education, and the one published has questionable qualitative value. The team engaged other centres outside Poland, such as the University of Hradec Kralove (Czech Republic) and the Pontifical Selesian University (Italy), which expressed their willingness to cooperate and implement the developed methods. The team aspires to develop a package of solutions supporting studying for autistic persons. This package will be first introduced at NCU, then at other universities in Poland, and thanks to publication in scientific articles it will become available to universities outside Poland.
The scientific aim of the project is to determine the predictors of social and educational success of autistic students after they begin their studies in higher education. Longitudinal studies will allow us to achieve this scientific goal. Autistic students will be studied repeatedly. The project will examine: their change in coping with studying, and their change in attitudes towards the study process. The research in the project will change the research perspective. Autistic students will be given a voice. They will become experts in their study process (Collins & Evans, 2007, 2018; Turner, 2014 ; Goldman 2018). The practical aim is to develop a programme supporting this group of students at universities. The project posed a research question: what are the predictors of success for autistic students in the first year of first-cycle studies and uniform master's studies in NCU and at the UG? Researchers will look for the answer to this question in the experiences of autistic students (Treweek et al. 2019). The potential predictors of students included: their motivation systems, support provided to them by family or friends, their social competences, the level of their adaptive behavior, personality traits, gender, financial and social conditions of their existence, their school-leaving exams results, and the support provided to them by the university. Dependent variables are interpreted as random variables whose distribution of values in the set of studied objects cannot be predicted by researchers.
Neurodiversity as the basis of project conceptualization
In order to study autistic persons, a researcher must first define the term autism spectrum disorders (ASD). This means they must define and describe a person and then base it on the chosen understanding of this concept. Only later can a researcher move on to the world of empiricism.
We can perceive the empirical world only through certain schemes or ideas about it. The entire act of scientific research is oriented and shaped by the underlying accepted view of the empirical world. This image governs the selection and formulation of problems, determines what will be the data, what means will be used to obtain these data, and in what statements they will be mentioned (Blumer, 2007, p. 22).
A different approach to the study of social reality is proposed by Silverman (2012). He claims that the view of the social world is made through accepted models (paradigms), e.g. postmodernism, and concepts having their origins in a given model, e.g. aggressiveness, and theories being an ordered set of concepts enabling defining and understanding a given phenomenon (Silverman, 2012, p. 137).
“Theory is therefore a base for considerations about the nature of the world, and at the same time it remains separate from it. Thus, the theory provides both:
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a framework for critical understanding of the phenomenon,
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grounds for considering how what is unknown can be ordered (Jay Gubrium, private correspondence)” (Silverman, 2012, p. 137).
Following Silverman's (2012, p. 137) method of studying social reality, the research team, adopted the naturalistic model as a general framework for viewing reality when creating the research project. This model does not impose meanings and is characterized by field observations. Autistic persons and their way of functioning in higher education will not be stereotypically assessed in the adopted model, and thus characterized according to a predetermined key. Researchers in this project want to avoid stereotyping these people as needing constant help. Such an attitude often arises when evaluations are made by experts, i.e., diagnosing people. Researchers want to get away from simplifications. If there are autistic students at the university, then the university must implement certain solutions. It may turn out that people on the spectrum in their perspective need something different, and for many of them these needs are different (Richman, 2020). These persons will be studied through field observation and other research methods.The concept defining the perspective on this person will be the term neurodiversity derived from naturalism and the theory creating the framework for a critical understanding of the phenomenon will be the concept of neurological diversity, in which the research project was embedded. It is an opposition to the medical model of disability and at the same time an image of the diversity of human minds in many spheres, including: socializing, attention and other cognitive and learning processes (Singer, 1998, 2017). The concept of neurodiversity introduced into science by Singer was intended to define a type of social movement that counteracts discrimination against autistic persons. This concept was strongly popularized and became a term that did not treat neurodivergent persons as an example of an aberration or pathology, or even as a term for a problem. The concept of neurodiversity draws attention to having neurological disorders that are a permanent part of a person's identity. It is not a condition or disease that should only be treated (Baron-Cohen, 2000; Kapp et al., 2013; Rosqvist et al., 2020). Neurodiversity describes how people experience and interact with the world in many ways. People perceive reality differently, learn it differently and these differences is not treated as a deficit or abnormality. People are neurodiverse (e.g. with dyslexia, attention deficit hyperactivity disorder, dyscalculia, autistic spectrum and Tourette syndrome, intellectual disability, bipolar disorder), because this is a feature of the human species (Silverman, 2021).
Autism spectrum disorders are interpreted in the project without distinguishing between autism and Asperger's syndrome. The project aims to diagnose students in a multifaceted way and to develop a programme for supporting procedure the university can implement. Insufficient favour, lack of awareness or adequate infrastructure may result in exclusion of persons with neurodevelopmental differences. Researchers strongly emphasize in this project that they see autism as a neurodiversity. Researchers are moving away from autism as a developmental disorder or disability. The category of neurodiversity allows them to move away from stereotypes, that is, to view autism mainly through limitations and deficits. Researchers want to make a change and tell the story of autism as a different way of experiencing reality. Under the assumption that different does not mean inferior (O'Dell & Brownlow, 2015).
Understanding and accepting neurodiversity in the university community should facilitate the functioning of autistic persons and support their learning, and as a consequence, strengthen the potential of this university in the scientific, didactic and administrative spheres, e.g. thanks to a different interpretation of reality by these persons (Trefert, 2010, 2014). The project will check to what extent adapting to the neurotypical way of functioning at the university is necessary for success during studies, to what extent the university requires standardisation of behaviour and rejects persons who do not match the educational standards adopted at Polish universities.
Autism spectrum disorders in higher education
Autism spectrum disorders are diagnosed in Poland by a psychiatrist according to the ICD-10 (International Classification of Diseases 10th Revision) classification developed by the World Health Organization, which is still in effect. The doctor must remember that each person with autism is different and has a biography. He or she has experienced different upbringing processes and varied educational situations, has rich or poor experiences with therapy, and, above all, may have been diagnosed in early childhood, early adulthood or not diagnosed at all. Autistic people are divided into those who can lead independent lives or those who require support from others, including total support. The former group seeks higher education and seeks their path in life through study, i.e. acquiring knowledge professional competence, and new social skills. The latter group is the beneficiary of various aid and support institutions.
The new approach to autism assumes that it is not a homogeneous disorder, but rather a set of traits that create specific behaviors, needs, and attitudes that manifest differently at different stages of human development (Hobson&Petty, 2021). Meeting these needs requires constant effort, first on the part of parents, then therapists and teachers, and in adulthood, academic teachers and colleagues in the potential workplace (Silberman, 2021). Autistic persons constitute one of the large minorities in the world. They have always been part of society and have been referred to by various names: persons with schizoid personality disorder, children with schizophrenia, children with limited interests, children with minor brain damage or individuals with multidimensional personality disorders. The etiology of autism is not clearly defined and remains controversial. According to Silberman, it has been established that most cases of autism do not arise from new mutations (caused by civilization processes), but from old genes, the accumulation of which is greater in some families. Humanity has passed on this gift from the past in its genes through millions of years of evolution, and the idea of neurodiversityakes us perceive this gift as a valuable element of our genetic heritage (Silberman, 2021). Researchers in this project are aware of the different forms of defining autism and the challenges faced by autistic people. In this project, autistic students will have the opportunity to tell their own stories about themselves several times, and researchers will see how the vision of autistic students is shaped over time. This approach can create a new framework for developing a new support system at the university.
Simultaneously autistic persons may have a very interesting intellectual and cognitive potential. This is a group of persons who perceive reality in an innovative and controversial way and analyse data obtained through neuro-different cognitive processes. A neurodivergent person collects data from the surrounding world using senses whose functioning deviates from the accepted developmental norm ((hypersensitivity or hyposensitivity). At the same time, they pay attention to details that are "invisible" to a neurotypical individuals. Young autistic adults enroll in studies with just such potential, ready to analyse literature and data thoroughly, and work systematically, for example, with numbers, with a workaholic's flair and commitment to details. Unfortunately, these resources are accompanied by fear of contact with new situations and requirements, related to moving away from familiar people and spaces. It is a paralysing fear that sometimes even triggers clinical panic attacks. It generates problems in contacts with university research, teaching and administrative staff and is fuelled by the stigmatisation of colleagues, consequently leadings to abandonment of studies.
It is worth noting that some autistic persons are exceptionally gifted. This is a group of people called twice-exeptional (2e). This term means that a person has both gifts/talents and disabilities and unfortunately it is associated with a lack of understanding on the part of educators. They need to learn how to support this group of intelligent students to help them complete their studies successfully (Reis et al., 2021).
The research team developing the assumptions of this project considered the potential of autistic persons and the fact that no country should consciously or unknowingly give it up by failing to use this resource in the process of studying in higher education.
Autistic people may have skills particularly suited to HE, such as proficient memory skills, a focus on detail, and creative thoughts, as well as passionate interests. and a strong desire to acquire accurate knowledge (Drake, 2014; Gobbo & Shmulsky, 2014; Van Hees et al. 2015) (Below et al., 2021).
In addition, the project assumptions were influenced by statistics regarding the increasing percentage of autistic persons in the population who will apply for admission to university. Regardless of the ideas adopted, autistic persons will become students of higher education in a relatively large number and it is necessary to prepare for this situation as declarations of help and good intentions alone are not enough (cf. Clouder et al., 2020).
Studying with autism at a Polish university
The research project concerns the current and increasingly common social issues. According to data from the Polish National Health Fund, in 2019, the number of patients under 18 years of age diagnosed with autism was 52,580 (in 2004–7,075 patients), while in the group of those over 18 years of age the number was 6,085 (in 2004 − 610 patients). Interesting facts come from the Educational Information System (EIS) of the Polish Ministry of Education and Science, which show an increase in the number of students with special education certificates issued due to autism spectrum disorders in the last five school years:
− 2017/2018–16 098
− 2018/2019–21 150
− 2019/2020–21 242
− 2020/2021–27 659
− 2021/2022–36 1891.
Thus data show a significant increase in the number of diagnosed autistic persons in Polish society. The reasons for this increase are irrelevant for the research in the project and include: increased social awareness of the issue of autism, a precise and frequent process of diagnosing (multi-aspect diagnosis) of the spectrum, or an increase in the range of symptoms attributed to autism.
In Poland, as in other European countries (cf. Below, 2021), there are no precise data on the number of people with ASD diagnosis studying in higher education. This is due to various reasons, and one of the main ones is the fact that students who do not want to be stigmatised and discriminated against due to their diagnoses or disability certificates do not disclose having autism spectrum disorders.
The right to education is granted to autistic persons by the Constitution of the Polish Republic and the United Nations Convention on the Rights of Persons with Disabilities, ratified by Poland in 2012. On these legal grounds, every person with ASD has the right to free education in Poland, including free higher education studies. In 2019, the Act on ensuring accessibility for persons with special needs (including ASD) was published in Poland, guaranteeing the right to accessibility in three areas: architectural, digital and information and communication. The acts mentioned above have become a legal indication for preparing a research project that takes into account a model of barriers in the conceptualisation of disability or lower ability due to age or disease. An additional impetus for developing described research was provided by the experience related to the "Student Assistant with ASD" programme conducted at NCU since 2022, coordinated by the author of this article and Scientific Circle of Young Special Educators. The programme is financed by European Funds and its aim is to provide support to autistic students in the form of an assistant, with whom they will overcome difficulties related to finding their way in the new university reality. The programme has an incubator of assistants recruited from neurotypical students. Each of these persons undergoes a training preparing them to be assistants and acquainting them with the issues of autism. At NCU, the assistants are peers, participation in the programme is voluntary and every autistic person can ask for support, even if they do not have a diagnosis but feel neurodivergent. At NCU, assistants are colloquially known as angels. “Student Assistant with ASD” organises social meetings for the students they support and training for academic and administrative staff of the university entitled “Feel what I feel! How does an autistic person perceive the world?”. The latter was aimed to familiaris NCU employees with the experiences of persons with the autism spectrum and their functioning, e.g. in the academic environment. The "Student Assistant with ASD" programme became an impetus for developing the scientific assumptions of the described research project and an inspiration for scientific research, the results of which may be helpful in academic teaching, conducting research together with autistic persons and making life in the university community of this group of students easier.
The research project “Diverse minds - studying with ASD” is the first stage of research into the functioning of persons with autism spectrum disorders in the academic education system. Next, the research team plans to research interventions that make studying easier for autistic peorsons: support by peer self-advocates working with autistic students as part of the statutory activities of the university's Disability Services Office unit, offering customized services, supporting through an application that facilitates navigating around the university, support by equipping autistic individuals with alternative and supportive forms of communication (Watkins et al., 2019), support through training of university administration and teaching staff, workshops and the developed "Guide to ASD" (by the authors: Agata Markowska, Ditta Baczała), which is a kind of textbook on the functioning of autistic students, fostering a disability-friendly community college environment in NCU (cf. Billstedt, 2005; Berry, 2018).
[1] https://autyzmwiedza.pl/jak-czesto-wystepuje-autyzm/