Inclusive practice for students with neurodevelopmental disorders in Sweden

Neurodevelopmental Disorders (NDDs) arise from alterations of the maturation, architecture or functioning of the developing brain. In DSM-5, NDDs comprise attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), communication disorders, specific learning disorder, motor disorders and intellectual disability. NDDs are common with an estimated prevalence of 16.2% to 17.8% (1). Child and adolescent psychiatry has a pivotal role in the clinical assessment and treatment of NDDs. However, as NDDs are currently incurable, not necessarily pathological, but often cause lifelong challenges, they are a societal responsibility and a multimodal approach to NDDs is recommended with players in diverse arenas of society being decisive for individual outcomes (2, 3). This is particularly true for educational settings, where scholastic failure, exclusion and absenteeism is a widespread concern (4-6).

A pivotal concept to achieve equity of opportunities and better outcomes for children and adolescents with NDDs in school is educational inclusion. It aims to achieve adaptation of the environment to the diverse prerequisites and needs of individuals, instead of demanding of individuals to cope with the challenges of a given context themselves exclusively (7). While many countries have transformed from a perspective that children with NDDs cannot be educated adequately in regular schools and require special school settings to that almost all children with NDDs should be able to succeed in mainstream schools, simply placing children with disabilities in regular classrooms is not inclusion and potentially harmful. Instead, inclusion means to establish a rich, accessible learning environment that is adapted to all pupils’ prerequisites (8). Scandinavian countries have in recent years taken political decisions towards implementing inclusion of youth with NDDs in education (9), seeking to operationalize the United Nations convention on the rights of persons with disabilities and the Salamanca Statement and Framework for Action on Special Needs Education, a document signed by 92 nations, aiming to lead the progress towards inclusive education.

https:/www.european-agency.org/sites/default/files/salamanca-statement-and-framework.pdf

The concept of inclusion is viewed somewhat differently depending on history, social factors and culture (10). For example, while a recent study showed that in France inclusion of autistic children and adolescents in regular classes depended on the presence of challenging behaviors, sensory processing, anxiety, adaptive and cognitive deficits (11), in Sweden, by school law, only pupils with intellectual disabilities can be excluded from mainstream schools. Inclusion is typically seen as education provided as a part of mainstream education that is put into practice by regular school staff, possibly supervised by specialists (12). It is also viewed as an approach that should focus on improving the learning environment, routines, procedures, pedagogy, staff behaviors and attitudes, not manipulating students, which would follow the concept of “integration”. However, the literature on specific inclusive educational actions is rather scare (13), and what inclusion should entail in practice for teachers and other school staff is often not specified and followed-up, or a matter of debate (14). Therefore, it is largely unknown, if and which concrete actions are currently implemented in mainstream schools by staff which could be subsumed as inclusive, although it has been hypothesized that inclusive practice remains poor for students with NDDs (15). The same is true for the status-quo of inclusion in educational settings in Scandinavian countries (16).

https://www.autism.se/rfa/uploads/nedladningsbara%20filer/skolenkat_autismforbundet_2018.pdf

Therefore, the purpose of this study was to examine inclusive education practice for students with NDDs in Swedish schools, where the Swedish School Act that came into effect 2011 strictly reinforces inclusion by highlighting the rights of all students to receive a safe, supportive and motivating education that is characterized by individualization, inspiration and curiosity of learning and development of skills

http://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/skollag-2010800_sfs-2010-800.

Overall, 5.8% replied ”yes” to the background item asking staff if their education had sufficiently prepared them for teaching students with NDDs; 13.5% replied “rather yes”, 36.9% ”rather no”, 32.3% ”no” and “8.4% ”don’t know”(p < .0001). Responses varied for different professionals. ”Yes” responses were highest for members of the school health team (nurses, social workers, psychologists, physicians) with 19.9% and lowest for primary/secondary school teachers with 3.4% (n.s.). In the whole sample, 14.2% indicated that they had received complementary education with focus on NDDs, and 82.3% that they had not (p < .00001). This figure was highest for special education teachers (53%) and lowest for primary/secondary school teachers (5%) (p < .0001). Regarding the subscale ‘Assessment of support needs’, the percentages of “yes” answers/item varied between 24.6 and 47.8% (Md =29.7%). These values were 10.9 to 47.4% (Md = 16.1%) for ‘Use of individualized support’; 15.5 to 50.5% (Md = 30.8%) for ‘Implementation of a structured learning environment’; 16.2 to 37.1% (Md = 27.6) for ‘Individual changes applied to schedule/teaching”; 15.1 to 47.1% (Md = 22.6%) for ‘Functional response to behavioral characteristics; 31.4 to 46.6% (Md = 42.7%) for ‘Cooperation with parents’, 3.4 to 47.1% (Md = 26.6 %) for ‘Consideration of peer relations’, and 8.9 to 65.9% (Md = 24.0 %) for ‘Staff education/professionalism’ (see Table 2 for a summary of findings). Principals/school leaders responded more positively than other professionals on the subscales ‘Assessment of support needs’, ‘Cooperation with parents’, and ‘Staff education/professionalism’ (p < .0003), while high-school teachers typically gave the least positive answers for ‘Functional response to behavioral characteristics’, ‘Cooperation with parents’, and ‘Staff education/professionalism’ (p < .0002).

While inclusion of students with NDDs in school is an explicit goal of Scandinavian educational authorities and policies (9), its contemporary concrete implementation in mainstream school practice is basically unknown. It has been argued that “true” inclusion of pupils with ASD, ADHD and other NDDs, which is adaptation of the learning environment to their needs beyond just placing them in regular schools, is still far from being a reality (15). Unfortunately, our data investigating actions taken that are consistent with inclusion or a prerequisite for inclusion in a large sample of school staff in Sweden are mostly consistent with this claim. Generally, school staff reported that they were not well educated to teach students with NDDs and that their own actions or their schools implementation of inclusive practice was limited. Especially regular teachers, being the largest group of respondents and at the same time working most closely with students, reported restricted skills and inclusive practice applied. The largest gaps were observed for the absence of mentor systems, and information of and the coordination with outside school services. There was also a substantial minority of “don’t know” answers, indicating a lack of communication or orientation about inclusive practice strategies. As the survey collected data from the perspective of service providers (school staff) not receivers (students, caregivers), we hypothesize that the current results are rather optimistic, and voices of parents and students themselves might have led to a different, perhaps even less encouraging pattern of results. Findings may also vary depending on the operationalization of inclusion, of which possibly a multitude are legitimate owing to the shortage of a widely agreed-on definition in practice (16). We used INCLUSIO, a questionnaire derived from development and supervision of school staff performed by NDD clinicians, not a genuine educational or teaching perspective. Our data are not brand-new, and despite public service routines usually being slow in introducing change, some dimensions of inclusion assessed in our study (e.g. staff education/professionalism) might have improved to the better meanwhile.

In order to achieve implementation of inclusion in education, we presume that several actions are recommendable. First, evidence-based education of NDDs, both basic science and applied practice, should be included in teacher and other school staffs’ mandatory education. Recently, the Swedish government has launched an educational bill that makes five full-time weeks NDD education mandatory for school teachers during their university education, which will hopefully serve this recommendation

https://www.regeringen.se/rattsliga-dokument/departementsserien-och-promemorior/2020/01/okad-kompetens-om-neuropsykiatriska-svarigheter-och-sex-och-samlevnad-i-lararutbildningarna/

In summary, to the best of our knowledge, we have for the first time and on a micro action level of inclusive practice shown that the majority of different school staff professionals in Sweden experience a great deal of potential to improve inclusive practice, as operationalized by the INCLUSIO questionnaire. The authors are not aware of any comparable study from Scandinavia or internationally examining inclusion implementation in NDDs in a comparable manner. We suggest several mostly top-down policy actions on state and municipality level to adequately address and develop mainstream school inclusion culture for this group. We think that for all of the proposed actions, child and adolescent psychiatric expertise and liaison will be important (19).