Turning points in the educational pathways of young people with attention-deficit/hyperactivity disorder in Sweden

ABSTRACT

There is considerable research evidence demonstrating the risk of adverse educational and other life outcomes for people with attention-deficit/hyperactivity disorder (ADHD), but little insight into the actual life encounters and experiences that shape their educational pathways. The paper examines critical turning points in the educational pathways of young people with an ADHD disability in Sweden and the factors influencing these turning points. It draws on the life-course perspective, using its concepts of turning point and trajectory. The included interview, observational and documentary data come from longitudinal ethnographic case studies of young women and men (between 18 and 31 years) with a diagnosis of ADHD. Four case examples are presented that typify the findings. They reveal the complex ways in which family and peer relationships, institutional environments, individual agency, and timing of life events have shaped the negative and positive turning points in the participants’ educational trajectories. The present findings question the continuing dominant deficit and impairment focus in current research, which assumes homogeneity of experiences, opportunities and outcomes for young people with ADHD, while failing to acknowledge the very individualised nature of these pathways.

KEYWORDS:

• ADHD
• turning point
• educational pathway
• disability
• Sweden
• relationship

Introduction

There is considerable research evidence demonstrating the risk of adverse educational and other life outcomes for people with attention-deficit/hyperactivity disorder (ADHD). School-age children have been shown to perform worse academically, have higher rates of school dropout and lower levels of education than their non-disabled peers (Kent et al. 2011; Loe and Feldman 2007). As adults, they are less likely to participate in higher education and the labour market (Kuriyan et al. 2013) and are at greater risk of turning to alcohol, substance abuse and crime (Groenman et al. 2013; Young et al. 2015). Given the well-acknowledged value of education for future life outcomes (United Nations 2015), it is surprising that we have little insight into the actual life experiences that shape educational pathways of this group. Such knowledge is important to addressing inequalities in education and designing appropriate interventions and services.

The present paper aims to identify critical turning points in the educational pathways of young people with an ADHD disability and the factors influencing these turning points. The focus is on Sweden, a country where the number of people diagnosed with ADHD, across all ages, has continued to increase over recent decades (Giacobini et al. 2018). Sweden’s early commitment, through policy, to equitable quality education for all and its generous welfare policies make it an interesting case to study.

The Swedish educational context

Compulsory comprehensive schooling in Sweden is divided into four stages: pre-school class (Year 0),¹ primary (Year 1–3), middle (Year 4–6) and secondary (Year 7–9). After secondary, an academic or vocational programme can be pursued at the upper secondary level. Entrance requirements vary across programmes, but since 2011 all require a passing grade in Swedish, English and Math from Year 9. An introductory programme is offered at upper secondary schools to students who do not meet the grade entry requirements.

While the proportion of people who continue to study after compulsory school has increased from 79% in 2000 to 89% in 2019 (Statistics Sweden 2020), data from the Swedish National Agency for Education (2019) show that, in academic year 2018–2019, 1 in 4 students did not receive complete grades in all compulsory school subjects. The over-representation of students with ADHD and autism among those leaving school with incomplete grades has been acknowledged in the public debate and been revealed in disability organisations’ member surveys.² No official statistics are available, however, as maintaining a register of disabilities is not permitted in Sweden.

Students can only apply to an upper secondary school up to the year in which they turn 20, after which time studies at the compulsory and upper secondary level can be pursued through municipal adult education centres. Having this option has been shown to be a backdoor into education for those who leave school without the necessary grades as well as a ‘second chance’ for vulnerable groups (Baysu and de Valk 2012, 786).

While education at all levels is free in Sweden, there is also financial aid, including grants and loans, available for adult students studying at least 50% of full-time. If assessed and found to require more time to finish school due to their disability, students with disabilities (19–29 years of age) can instead receive ‘activity compensation for extended schooling’ for studies up to the upper secondary level. This kind of social welfare support for education is clearly needed, as data from the Swedish Employment Agency show that, at all stages of the educational system, the education level of people with disabilities is lower than that of the population as a whole (Statistics Sweden 2018).

Alongside the comprehensive school system, which offers numerous options to individuals of all ages to resume education as well as possibilities for financial support, since the late 1990s, Swedish education policy (SFS 2010:800) has centred on ensuring an inclusive general education system that meets the needs of all students. All students in compulsory, upper secondary and adult education are to be given the opportunity to achieve individual learning objectives based on their personal situation and ability, and special educational support is to be provided based on need and not on diagnosis. Thus, in multiple respects, Sweden seems to cater to the diverse needs of individuals within the education system.

Factors influencing educational progress for people with ADHD

A thorough literature search revealed a paucity of research on turning points in educational pathways for people with ADHD. The few studies that did engage with turning points were restricted to substance abuse (e.g. Jensen et al. 2018) and made no links to education. On the whole, little attention has been paid to education from an adult perspective, with most of the limited research focusing on university students with ADHD (Sedgwick 2018). This focus is questionable, as it is well established that people with ADHD are less likely to attend university (Kuriyan et al. 2013).

In contrast, there are many studies on school-age children. A review of this research shows that it is strongly driven by a psycho-medical perspective. Adopting this deficit approach, the focus has been on school-related challenges and limitations arising from ADHD symptomology, such as their impact on academic achievement (e.g. Lawrence et al. 2021), transition across school stages (e.g. Langberg et al. 2008) and other areas of school functioning (e.g. Chiang and Gau 2014).

Another main area of research contains intervention studies on ways to improve school performance and the situation for students with ADHD. Despite massive criticism of pharmacological interventions, they have been the dominant mode of treatment (Sedgwick 2018), regardless of age, even in Sweden (Giacobini et al. 2018). While medical interventions have resulted in improved academic and behavioural performance (Jangmo et al. 2019), it has been argued that they have only short-term effects and fail to bring about more profound change (Te Meerman et al. 2017). Other interventions in the school context have had an individual (e.g. behavioural) or environmental (e.g. partnering with families, collaboration, teacher training) focus (Daley and Birchwood 2010), but have also tended to be driven by a deficit perspective (DuPaul and Evans 2008). While conclusions have varied regarding the efficacy of these interventions (Moore et al. 2016), the long-term impact on educational pathways is not known.

Of relevance to the present paper is qualitative research identifying the facilitative and obstructive factors encountered and/or experienced by persons with ADHD at different stages of education. Most evident in the findings from these studies is the significance of parents and their ability to mobilise support and advocacy for their child in an educational setting (Wiener and Daniels 2016; Bartlett, Rowe, and Shattell 2010). Teachers’ positive attitudes and perceptions of the child’s behaviour, good knowledge of ADHD, supportive classroom strategies, care and understanding are some of the facilitative factors frequently recognised (Gibbs, Mercer, and Carrington 2016; Bolic Baric et al. 2016). Many of the factors identified as positive when present have conversely been shown to be a hindrance when absent (Gwernan-Jones et al. 2016). Transitions between educational stages have also been found to be an obstacle, in that existing support is often removed and not replaced (Wiener and Daniels 2016). Moreover, as the individual ages, the support needed has been shown to become increasingly difficult to access (Dunne and Moore 2011).

More critical research has shown that the diagnosis and the focus on the individual as the bearer of the problem per se constitute the most significant barrier for these young people, resulting in segregation, exclusion and broken school journeys (Honkasilta and Vehkakoski 2019). Others have argued that the diagnosis is the very reason for future failure, in that it affects identity and places the individual on a separate educational pathway (Hjörne and Evaldsson 2015; Malmqvist 2018).

Turning points in the life-course perspective

The life-course perspective is increasingly being used by educational researchers to understand processes of educational attainment and inequality (Crosnoe and Benner 2016) and offers a useful approach to studying disability (Buchner et al. 2014). Of particular interest in the present study is this concept of ‘turning point’, which provides a way of conceptualising how particular events, experiences, or awareness may deflect an individual’s educational trajectory, moving it in a positive or negative direction (Hutchison 2005). Both kinds of redirection of trajectories are important to understand if we are to address educational inequality (Crosnoe and Benner 2016).

The essential characteristic of a turning point is that it changes the direction of a trajectory. To be able to confirm a turning point, two aspects are crucial: passage of time and current trajectory (Wheaton and Gotlib 1997). It is only the passage of time that can confirm the stability of the redirected pathway, i.e. determine whether it was truly a turning point, ‘rather than a minor ripple’ (Abbott 1997, 89) or temporary detour (Hutchison 2005, 145). Thus, it is only in hindsight that turning points emerge, as it becomes clear that there has been a change in direction. Moreover, turning points cannot be established without defining the current educational trajectory, as it is the baseline from which the stability of these turning points can be assessed.

While a turning point gives the impression that it is restricted to a certain event or circumstance, Berglund (2007) has argued that turning points do not emerge in isolation, but are more like a process. A situation may lay the foundation for a possible turning point, but sustaining a turning point is strongly related to the confluence of multiple factors. To unpack the factors that influence turning points, the present study will draw on some of the premises of the life-course perspective. This perspective acknowledges that the life course of individuals is embedded in, and shaped by, their context, but it also attributes importance to individual agency in making choices under the conditions of this context (Hutchison 2005). Another key premise is linked lives, which relates to the interdependence of human lives and the ways in which relationships with others (e.g. parents, partners, siblings or peers) can both ‘support and control an individual’s behavior’ (147). The timing of lives, i.e. the age at which specific life events and transitions take place, is also important here.

The analytical tools provided by the life-course perspective are particularly helpful for studying turning points in the educational pathways of people with ADHD – people whose lives are often described as a series of ups and downs. These tool can help in separating critical factors, occurring over time, that have shaped their educational trajectories.

Method

The present data were collected using an ethnographic case study design (Merriam 2016), during 2017 and 2020 as part of a broader study.³ The current article draws specifically on extensive, in-depth qualitative data from nine young people, six women and three men aged 18–31 years, with an ADHD diagnosis. To gain access to individuals with varying backgrounds, in different life phases and living in different locations, I established contact through various channels, such as online forums, posters in public spaces, adult education centres and word of mouth.

To facilitate following the participants over time, it was important to gradually establish a trusting relationship. The initial meetings were crucial in this regard, and my experience and knowledge gained by having worked with people with special educational needs proved useful. Each time we met, I had to make a quick assessment of how the person was feeling at that moment and adapt my approach in the conversation accordingly. This was just as important to the quality of the data as to relationship building. Initially, some participants preferred known secure spaces for these meetings, but over time we met at different places (café, home, school, walk, public spaces, park, etc.). I even shadowed them occasionally in their everyday lives, including interactions with state agencies, health care and other support services provided in their current settings. The data for each participant include their narratives, numerous informal conversations, observations, SMSs, photographs, certificates and available documentation from schools, institutional settings, social services and health services. Furthermore, semi-structured interviews were carried out with key individuals (parent, teacher, sibling, etc.) in the participants’ lives. The type of data, approach to data collection and intensity of contact did not only differ for each participant, but also varied across the duration of the study, depending on their current circumstances and preferences. On average, they were followed for two years.

Prior to data collection, ethical approval was obtained for the larger study from the Regional Ethical Review Authority in Linköping.⁴ Voluntary participation was not tied to any monetary or other form of remuneration. Nonetheless, the vulnerable group in question and the chosen approach and duration of the study entailed the risk of dependency. This placed great ethical responsibility on me to regularly reiterate my relation to the participants, including their right to withdraw at any time and assurance of confidentiality. The sensitive nature of the information sometimes brought back painful and forgotten memories, and I adopted a sensitive approach to each individual, sometimes pausing the contact. One general rule I adopted was not to call, but to communicate with the participants via SMS or e-mail, giving them the opportunity to choose not to respond or continue with the study, without having to verbalise their intentions.

As turning points can only be identified in relation to an individual’s trajectory and the stability of the change over time, a two-step process was adopted for the analysis. The first process mapped the routes traversed by each of the nine young people in relation to the significant milestones in the Swedish education system, as well as other major incidents and transition phases in their lives. Based on the young people’s narratives, a visual timeline was created that mapped their educational and life trajectories. New information obtained from other data sources (documentation, key person interviews) was discussed with participants in follow-up conversations and used to further develop the mapping. This continued through the period in which the participants were followed to help identify where their educational trajectories seemed to be heading at present.

The focus of the second step was on turning points within each individual trajectory. Negative and positive turning points (or lack thereof) were identified by paying close attention to the phase during which the trajectory had changed and taken a new direction. This involved looking closely at all planned and unplanned transitions within and between educational settings. This was followed by unpacking the likely factors that had influenced and shaped these turning point processes, through an individual detailed analysis of all the data for each participant. Each participant’s own narrative was central to this analysis. The life-course premises of linked lives, contexts, individual agency and timing of events were used to deepen the analysis.

Findings

Based on the similarities across participants in the occurrence and nature of turning points, four thematic groups were identified. These are illustrated here using case examples of Hanna, Pontus, Malin and Robert. Each case starts with a brief description of the individual and their educational journey, followed by a detailed account of the turning points in their trajectories.

Hanna

Hanna’s father left when she was three, and she grew up with her mother and sister in a semi-urban town. Her mother had mental health and alcohol problems, and home life was described as being filled with conflict, which worsened over the years. Academic and social difficulties at school were present from the outset. Hanna has attended three different schools. In secondary school, she started playing truant, drinking and smoking. She left school with pass grades only in practical and artistic subjects.

Because this was before the new upper secondary reform, she was admitted to a programme, even though she did not have passing grades in Mathematics, Swedish and English. After a couple of months, she started playing truant and engaged in intense drinking, drugs, shoplifting and strip dancing. The school authorities warned her numerous times about her truancy. When they threatened to stop her study grant, she returned and kept her attendance at the bare minimum. Hanna dropped out after a year and a half.

The period since then has been rife with difficult relationships and intense drug use, but Hanna has also held jobs. She made one unsuccessful attempt to complete her compulsory education. She received her diagnosis in her late twenties. Currently she lives with her two children and is on illness benefits.

Negative turning point 1

Starting Year 1 in a school where the conditions were not conducive to Hanna’s needs initiated the first negative turning point. She frequently mentioned never really understanding what she was expected to do in school. This coincided with her being at a relatively large school – one that had recently received a number of refugee children. Her unrecognised difficulties in following lessons as well as in making friends laid the foundation for a negative turning point, but this ceased temporarily in Year 3 when the family moved and Hanna started at a much smaller school, which was clearly better suited to her needs.

The teacher had time to sit and show me what I had to do. I enjoyed school, the sound level was low, not many children and it was easier for me to learn and pick up what I had to do. I also made friends. (Hanna)

This stability was short-lived. She was forced to move to a large school in Year 6, which resulted in a rapidly accelerating downward spiral, with the problems from the first few years of school resurfacing, intensified further by the higher academic and social expectations being placed on her. Having intense difficulties in the theoretical subjects and being unable to follow the instruction, Hanna chose to start skipping these lessons. During these periods, she encountered peers who initiated her into smoking and drinking and who encouraged truancy. By the time school recognised her support needs, Hanna’s trajectory was already on a negative path.

Negative turning point 2

Hanna showed agency in turning her educational trajectory in a positive direction by choosing to pursue an aesthetic programme at the upper secondary level, something she had an interest in and aptitude for. However, lack of financial support from the family put a stop to this.

The school was far from where I lived. Mamma drank a lot at that time, I had to manage myself. I was 16 and had no money to pay for accommodation so I couldn’t start there … so I found a regular programme in my town. (Hanna)

Although Hanna did start another upper secondary programme, the previous event marked the beginning of another negative turning point, which was further strengthened by the inadequate conditions for learning at the new school. Unable to cope with the academic demands, Hanna began playing truant again. At this point, she made a friend outside school, a relationship that was instrumental in the choices Hanna made and in consolidating this turning point.

I met a messed up older girl … she introduced me to strip dancing to make money, we were doing crazy drugs and drinking all the time. I didn’t need the study grant anymore, so I stopped going to school.

Negative turning point 3

Many years later, Hanna showed agency once again to try to positively re-direct her educational trajectory. Initiating this was the birth of her first child, a point at which she said she realised what kind of life she was leading and the risk of social services taking her child away. Making lifestyle changes, she moved away from her partner and resumed her education through an adult education centre. To survive financially, she turned to social services, but she struggled on her own to navigate access to the financial support, something that was even observed during the years she was followed. Looking after two children, having constant financial concerns and feeling emotionally drained took all her energy, and she soon dropped out, further deflecting her already negative trajectory.

Pontus

Pontus grew up in a big city suburb. His mother left the family when he was four, and his father raised Pontus and his siblings. According to the available documentation, the father was present at school, health care and social service meetings. The father had a drinking problem, which intensified in periods. Academic and behavioural problems surfaced in middle school, with increasing truancy in secondary school. Various interventions were provided by the school. A formal diagnosis of ADHD was made in Year 7. Medication was tested but discontinued due to its relative ineffectiveness. Pontus left school with very few pass grades.

He continued directly to an introductory programme at an upper secondary school, but dropped out a few months later. A similar failed attempt was made at two other upper secondary schools. Pontus spent the subsequent years at home helping his father in his cleaning business. Many years later, he started at an individualised education unit at an adult education centre to pursue his compulsory education. With the help of social benefits, he is now studying upper secondary courses, living independently and even considering continuing to higher education.

Negative turning point

This turning point was an intricate amalgamation of various factors throughout the school years. It started in Year 4 with Pontus having difficulties in his studies, which he expressed through his lack of interest and motivation. However, it was the school’s lack of timely recognition of Pontus’s difficulties that was critical to this turning point. This was not due to school neglect, but a consequence of the timing of certain serious behavioural incidents involving Pontus, which dominated the school’s focus over a long period. While it brought attention to the complicated family circumstances, the difficulties in learning Pontus faced were missed.

An important factor that contributed to sustaining this negative turning point was the classroom context in Year 6, which was described by Pontus as large and rowdy. Greatly affected by the noise and disturbances, he spent considerable time out of class, with increasing behavioural oddities and the occasional act of aggression during this period.

While Pontus’s problems with learning did receive a great deal of attention from Year 7 onwards, with intensified accommodation and support efforts, it did not break the negative trend. Regularly noted in school documentation was his lack of interest and motivation, making all inputs ineffective. However, the analysis showed that, unlike the middle school years where difficulties in learning were the drivers, there were also other factors at work here that were shaping Pontus’s choice not to engage. These were the social difficulties – bullying and teasing by peers due to the incidents in Year 6.

I felt I didn’t fit in anywhere or with anything, I couldn’t do the work in school, everyone made fun of me. I chose to stay home and play TV games. It was like a safe space, rather than go to school where people would make fun of me. (Pontus)

Positive turning point

When Pontus understood the consequences of not having pursued his school studies, a positive turning point was initiated and emerged during the period he worked with his father.

I helped him for so many years. I think if there is a low point then it was that period. Then I constantly thought about what I was doing there. That is when I realised I had fucked up; that is when I realised the consequences; that I was now an adult and I did not have pass grades for compulsory school.

This readiness to turn things around would not have yielded a positive result if he had not been given an opportunity to make a new start. This opportunity came in the form of timely call to participate in a government project meant to help young adults without school grades return to education. His agency and this opportunity were accompanied by suitable conditions for learning at the adult educational setting he was placed at. The individualised study pace and, even more so, the pedagogical approach provided a conducive environment for Pontus to learn in. Now, for the first time, he experienced academic success, laying the foundation for a positive shift in his educational trajectory.

However, the sustainability of this turning point and the direction Pontus’s trajectory was to take were strongly determined by the relationships with teachers in this setting. Following him during the study, I observed how the teachers showed an interest in Pontus’s general well-being, often providing emotional and practical support, which extended beyond their role. Key here was the help they provided with navigating and accessing the available societal support, particularly financial, that was central to his daily survival, allowing Pontus to concentrate on his studies. In this setting, Pontus gradually experienced increased belief in his own capacity and ability, and even more importantly, he developed aspirations for the future, which consolidated this positive turning point.

Malin

Malin grew up in an urban town with her brother. Her parents separated when she was a teenager. They have been closely involved in her life and over the years provided practical and financial support. In primary and middle school, Malin attended a class with 12 children, many of whom had health-related concerns, including herself. The middle school period was rife with accounts of severe conflict with the teacher. Malin moved to a new school for secondary, and she occasionally played truant. A year later, she changed to another school and the truancy intensified. She also started using drugs. Malin left school with complete grades.

After compulsory school, Malin spent many years in and out of juvenile institutions. As an adult, she continued to have intense periods of drug use, made a few failed attempts to return to upper secondary education, but also held jobs for short periods. In her mid-twenties, through an adult education centre, she obtained the required grades to apply to university. Malin received her ADHD diagnosis while at university. She is currently studying in her final year.

Negative turning point

This turning point is a complex interplay of multiple factors over an extended period. Its early expression was the extremely strained relationship with the class teacher in middle school. Malin narrated, ‘ … it was just chaos. The teacher never really understood me … we fought from the very beginning. I was so frustrated when I came home’. Her parents had noted the teacher’s inappropriate approach and found Malin to be more anxious at home, but because she was faring well in her studies and in sports outside school, they ascribed little importance to these incidents with the teacher. Spurring this turning point were the conditions Malin faced in the new secondary school environment. The transition to a big school with large classes was a huge contrast to the 12 students Malin was used to.

A third factor identified that added force to this turning point was the timing of certain events in Malin’s life. Changed family circumstances in Year 7 led to cancelled summer plans. With her friends away, Malin had little to do over the summer, and she began hanging out at the town centre where she made new friends. These peer relationships strongly influenced Malin’s decisions after summer. She transferred to the school attended by these peers, which in turn pushed her away from her stable circle of friends and sporting activities – factors that had been supportive during the first difficult year of secondary school. Further, she chose to be at school less and less and to engage more in drugs.

Having complete grades from compulsory school could have put a stop to this negative trend, but peer relationships from the secondary years continued to shape Malin’s choices. She applied to upper secondary school, but barely started. Drugs dominated her life, and she spent weeks away without her parents knowing her whereabouts. Being placed at a juvenile institution could have limited the gradient or stopped this negative trajectory, but, on the contrary, the lack of appropriate educational opportunities at these institutions sustained and further intensified this negative turning point. Malin described: ‘They had never had anyone who had finished secondary school … there were no classes for me. I was forced to make silver armbands … I was bored, hated it and ran away many times’. This lack of educational input and stimulation pushed Malin’s trajectory even further away from upper secondary education.

Positive turning point

When Malin was in her mid-twenties, a positive turning point was identified that gradually redirected her trajectory to higher education. Here too an intricate interplay of factors was visible in the analysis, but it was initiated and driven by her own agency. Receiving benefits from social services, she was forced to apply for an apprenticeship. Based on her background with drugs, the Swedish Employment Agency only offered her the option to work at a warehouse. Malin’s belief in her own potential drove her to look for something better. It was here that her parents’ social resources came into play, in that they arranged a job for Malin at a clinic.

Being in this stimulating environment triggered in her an interest in pursuing a medical career. With this renewed drive, she made another attempt to return to upper secondary education. However, this would have failed to be a positive turning point if Malin had not encountered the right conditions for learning. After an initial struggle, Malin met a teacher who saw her academic potential, but also recognised the need for alternative forms of examination and frequent pauses. This resulted in her successfully completing upper secondary school and consolidating the positive re-direction of her educational trajectory.

Robert

Robert grew up with his sister in a semi-urban city. His parents had been engaged in his life from the early years, providing him with academic, emotional and practical support, and as an adult even financial assistance. Accounts of conflict with teachers marked the school years, the worst period being middle school. Robert started at a new school in Year 6. He left compulsory school with complete grades and continued straight into upper secondary education, where he received some accommodations in his final year. After completing the upper secondary level, he took a break for a couple of years. He was diagnosed with ADHD at 17. He is currently filling in as substitute staff at schools, but his intent is to continue with a more specialised vocational programme in the future.

No turning points

Robert’s educational trajectory differs from the previous three cases, as no turning points were evident in the analysis. At every stage of Robert’s educational journey, significant phases were identified in the data that could have resulted in a negative turning point, but changes in his trajectory never occurred, and he maintained his path. It was therefore interesting to discover what prevented these turning points from occurring. The analysis showed that Robert had what I call transitional protection in the form of the timely actions and interventions of his parents.

One such critical phase was in middle school, which saw intensified conflicts with teachers and Robert increasingly being misunderstood. Robert said: ‘My middle school teachers didn’t like me … there was trouble, a lot of fighting and conflicts in general … I came home upset every day and some days I just didn’t want to go’. Numerous incidents were described by both Robert and his parents to exemplify the difficulties during this period – incidents that could have resulted in a negative turning point, but that failed to. The reason the incidents did not have negative consequences is the decision taken by Robert’s parents to move him to another school. His parent had felt the new school environment would be better for him, and in hindsight Robert ascribed great importance to this decision.

We knew clearer discipline would be good for Robert, like rules about how to behave, and that bit was very important in the new school. The study environment was much calmer. We knew it would promote Robert’s education. (Parent)

Another example of Robert’s parents’ timely intervention was during the final term of upper secondary school, when Robert was on the verge of dropping out because he was overwhelmed by the pressure he had put on himself to perform well academically as well as by emotional fatigue and sleeping problems. His parents intervened and negotiated a solution that allowed Robert to drop one difficult subject, take on another one and have a few extra months to complete the examination. During this period, one of the parents helped him immensely in preparing and writing his final paper.

Robert’s parents’ timely interventions and negotiations are surprising given that Robert received his ADHD diagnosis at 17 years of age. However, his parents noted having recognised Robert’s ADHD-like difficulties at an early age, based on their own personal and/or professional experiences, which probably helped them provide the scaffolding needed to mitigate negative turning points.

Discussion

The findings have revealed the fluidity, complexity and variability of the timing of turning points (or lack thereof) and the multiple factors that influenced these turning points in the participants’ educational pathways. The intricate interplay of family and peer relationships, institutional environments, timing of life events, and their own agency was found to have either deflected trajectories away from education or re-directed them in a positive direction. The complexity illustrated in the findings calls into question the simplified approach adopted in much of the empirical research on ADHD and education, which is highly skewed towards deficits or impairments associated with the diagnosis. Irrespective of the research focus – be it functioning at school (Lawrence et al. 2021), school-based interventions (DuPaul and Evans 2008) or school experiences (Wiener and Daniels 2016) – the underlying as well as explanatory framework has been driven by a psycho-medical perspective. The argument here is not to undermine the existence, knowledge and experience of ADHD difficulties (cf. Hinshaw and Scheffler 2014). In Robert’s case, an understanding of these difficulties helped his parents provide transitional protection. Still, it is also important to recognise the interconnected lives of individuals with ADHD and the multiple contexts they inhabit, which are of great importance in shaping their educational choices and paths.

This lack of acknowledgment of the diversity among students with ADHD in educational settings can be seen in practice in many countries, including Sweden. Despite the strong policy commitment to creating an inclusive general education system, with support based on need and not on diagnosis, studies from Sweden have revealed a growing tendency towards diagnosis-based grouping and intervention in school (Malmqvist 2018; Hjörne 2016; Evaldsson and Karlsson 2012). The phenomenon of a diagnosis shaping practice in the Swedish schools is likely to be reinforced by the recent introduction of mandatory content on neuropsychiatric difficulties⁵ in special teacher and special educator programmes – content that is now being further extended to teacher education programmes. While understanding the possible ways in which ADHD could impact learning and school functioning might promote teachers’ timely recognition of and response to students’ learning challenges, this knowledge also carries with it the risk that the deficit focus will gain even further ground in practice. The psycho-medical framing of ADHD is likely to result in continued neglect of school-based environmental factors that underlie the problems at school (Malmqvist 2018), but even more significantly in disregard for other factors that shape the educational lives of young people, as also shown in the present findings.

Teachers were found to play an important role at negative and positive turning points. This is in line with previous research, which has often identified the teacher as a barrier and a facilitator, often based on their knowledge of ADHD, understanding of its impact on students, and use of supportive strategies (Gwernan-Jones et al. 2016; Gibbs, Mercer, and Carrington 2016). While there is some evidence of this in the present findings, the relationships between the participants and their teachers were more pertinent and significant at turning points. In Malin’s (and Robert’s) case, conflict-laden relationships with teachers initiated the negative turning point in school. The strained relationship between students with ADHD and their teachers is highlighted in Ewe’s (2019) systematic review, which revealed less emotional closeness, more conflicts and less co-operation between students with ADHD and their teachers than between students without ADHD and their teachers. Greater acknowledgement, awareness and discussion of this tendency among teachers could prevent some students with ADHD from initiating a negative spiral.

In contrast, in Pontus’s case, his relationship with the teachers at the adult education centre was integral in sustaining the positive turning point in his trajectory. Previous qualitative studies have shown how teachers who care can greatly impact learning and engagement in school among young people with ADHD (Bartlett, Rowe, and Shattell 2010; Bolic Baric et al. 2016). Evaldsson and Svahn’s (2019, 270) detailed examination of student-teacher interaction over one school year in a special educational needs setting found that ‘ … teachers’ scaffolding practices … are as much about building learning relationships based on mutual trust as they are about enhancing the relevant skills required for becoming a competent student’. While this largely confirms what was observed in the present study, teachers in the individualised adult education setting extended this ‘scaffolding’ further by helping Pontus to navigate and apply for the social welfare resources available – resources that were critical to maintaining the positive turn in his trajectory. This shows that, for adult students with ADHD, positively re-directing educational trajectories is about more than just the pedagogical environment. In the absence of family support, young adults with ADHD are dependent not only on these welfare resources, but also on receiving help in accessing them. As shown above, not receiving such help put a stop to Hanna’s attempt to turn her trajectory in a positive direction.

Surprisingly, learning spaces for adults have received little attention in the ADHD education research. There is a need to better understand the impact of these adult education settings on the educational lives of young people with ADHD and the possible role of these settings in putting educational trajectories onto a positive path, as in the cases of Malin and Pontus. This need is even greater in Sweden, where adult education is seen as the most common pathway for a ‘second chance’ in education (Baysu and de Valk 2012, 786).

Parents’ social resources, advocacy and/or engagement have been frequently identified as important determinants of successful educational pathways for people with disabilities and this was even observed for Robert and Malin in this study. In narrative biographical interviews with 107 young people with disabilities across four countries in Europe, Buchner et al. (2014) noted the great importance of parental involvement in education for facilitating academic achievement as well as progress in school settings. Similar findings have been reported with regard to ADHD. In Wiener and Daniels’s (2016) study, adolescents described how their parents had advocated for them at school, helping to address conflicts and negotiating access to appropriate services. Parental guidance and perseverance have also been shown to be critical for young adults with ADHD in order to access appropriate support services (Dunne and Moore 2011).

There is no claim being made here that the occurrence and nature of turning points identified in this study can be generalised to people with ADHD in Sweden. However, what the present findings do show is the inherent complexity of turning points in educational pathways. These findings add support to the growing body of research questioning the continued dominant focus on diagnosis, which assumes homogeneity of experiences, opportunities and outcomes for young people with ADHD, while failing to acknowledge the very individualised nature of these pathways. Acknowledging the complexities of these pathways is crucial to designing appropriate educational interventions and services for people with ADHD. In the absence of such efforts, young people with multiple layers of vulnerability, particularly those like Hanna, will continue to remain furthest from the benefits of education.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Swedish Research Council [grant number VR 2015-02024].

Notes on contributors

Shruti Taneja-Johansson

Shruti Taneja-Johansson is a senior lecturer at the Department of Education and Special Education, University of Gothenburg. Her research interests include educational equity and inclusive education, with a particular focus on persons with disabilities.

Notes

1 Before 2019, compulsory school did not include the pre-school class.

2 https://attention.se/wp-content/uploads/2021/03/rapport-skolenkat-2017_attention.pdf.

3 Participation for all? School and post-school pathways of young people with functional disabilities.

4 Reg. no. 2016/470-31.

5 The predominant term used for ADHD and Autism in Sweden is neuropsychiatric difficulties.