574582 research-article2015

AUT0010.1177/1362361315574582AutismBolic Baric et al.

Original Article

Support for learning goes beyond academic support: Voices of students with Asperger’s disorder and attention deficit hyperactivity disorder

Autism 1­–13 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1362361315574582 aut.sagepub.com

Vedrana Bolic Baric1, Kristina Hellberg2, Anette Kjellberg1 and Helena Hemmingsson1

Abstract The purpose of this study was to describe and explore the experiences of support at school among young adults with Asperger’s disorder and attention deficit hyperactivity disorder and also to examine what support they, in retrospect, described as influencing learning. Purposive sampling was used to enroll participants. Data were collected through semistructured interviews with 13 young adults aged between 20 and 29 years. A qualitative analysis, based on interpreting people’s experiences, was conducted by grouping and searching for patterns in data. The findings indicate that the participants experienced difficulties at school that included academic, social, and emotional conditions, all of which could influence learning. Support for learning included small groups, individualized teaching methods, teachers who cared, and practical and emotional support. These clusters together confirm the overall understanding that support for learning aligns academic and psychosocial support. In conclusion, academic support combined with psychosocial support at school seems to be crucial for learning among students with Asperger’s disorder and attention deficit hyperactivity disorder. Keywords attention deficit hyperactivity disorder/attention deficit disorder, autism spectrum disorders, education, educational provision, psychosocial support, qualitative research, services, special needs students

Introduction Awareness of Asperger’s disorder (AS) and attention deficit hyperactivity disorder (ADHD) has generally increased within society, with an increased recognition of the reduced participation in education, employment, and independent living that these conditions entail (Boyd and Shaw, 2010; DuPaul et al., 2011; Levy and Perry, 2011; Loe and Feldman, 2007). Increased awareness of AS and ADHD may have been driven by increased prevalence. Currently, the prevalence is approximately 60–70/10,000 for the whole spectrum of pervasive developmental disorders in Europe, corresponding closely to figures derived from the United States (Elsabbagh et al., 2012; Fombonne, 2009). Students with AS and ADHD are two groups that often attend general education. In addition, they may have symptoms that overlap including social, communication, and emotional difficulties (Mulligan et al., 2009; Rommelse et al., 2011; Van der Meer et al., 2012). Research indicates

that students with AS and ADHD are likely to obtain poor grades and lower test and examination scores, experience deficits related to executive function such as planning and organization, and have social skill deficits which may affect interactions with peers (Barkley, 1997; Howlin et al., 2004; Levy and Perry, 2011; Loe and Feldman, 2007; Trampush et al., 2009). Consequently, students with AS and ADHD who experience difficulties in school might need support in order to facilitate learning and participation in school and to meet their educational goals (Gobbo 1Department 2Stockholm

of Social and Welfare Studies, Linköping University, Sweden University, Sweden

Corresponding author: Vedrana Bolic Baric, Department of Social and Welfare Studies, Linköping University, SE-601 74 Norrköping, Sweden. Email: [email protected]

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and Shmulsky, 2012; Hendricks and Wehman, 2009; Myers and Johnson, 2007; VanBergeijk et al., 2008). Similar to many other countries, the official goal in Swedish education is to include all students in general education, and special support measures are provided within the realm of the students’ regular classes (The Education Act, 2010). Students with intellectual disabilities attend special education in elementary and secondary school. Swedish elementary education lasts for 9 years (from the age of 7 to 16 years) and is legally mandated. Secondary school (from the age of 16 to 19 years) is not mandatory; however, almost all students who finish elementary school start a 3-year secondary school period of education. A school-leaving certificate from secondary school provides basic eligibility for university studies. In Sweden, children are entitled to education (The Swedish National Agency for Education, 2014). The right for support when experiencing difficulties in school is unconditional, but there are no clear guidelines on how the support should be designed (The Education Act, 2010; The Swedish National Agency for Education, 2009). In general education, students with AS and ADHD are often overlooked when it comes to accessibility, design, and implementation of adequate support (Bolic et al., 2013; Egilson and Hemmingsson, 2009; Falkmer, 2013). Furthermore, support is still commonly provided outside of the general education classroom in special classes and small groups for students with AS and ADHD (Giota and Emanuelsson, 2011; The Swedish Schools Inspectorate, 2012). There is an increased recognition of a gap in research between the needs of students with AS and ADHD and the support provided to facilitate learning and participation in education (Davis et al., 2004; Humphrey and Lewis, 2008; Humphrey and Parkinson, 2006). In addition, recent studies have highlighted the value of exploring the views of students with AS and ADHD regarding their educational experiences, in order to better plan and direct support that targets the students’ needs (Humphrey and Lewis, 2008; Mortier et al., 2011; Sciutto et al., 2012). So far, most research has focused on the needs of students, highlighting the difficulties individuals with AS and ADHD have in general education which prevent them from making the most of their education, including difficulties with social relationships with peers, bullying, and anxiety (Carrington and Graham, 2001; Humphrey and Lewis, 2008; Perry and Franklin, 2006; Portway and Johnson, 2005; Tippett, 2004). Studies focusing on support are predominantly survey studies on parents’ perceptions of their children’s education, and these indicate that support is limited and inappropriate. In addition, collaboration between the parents and the school and satisfaction with the support services at school are often minimal (Morrison et al., 2009; Parsons et al., 2009; Starr et al., 2006; Stoner et al., 2005; Vohra et al., 2013; Whitaker, 2007). Furthermore, studies have identified a need for increased knowledge and

training of personnel and the need to rethink practice in order to meet the needs of students with AS and ADHD (Griffith et al., 2012; Perry and Franklin, 2006; Sciutto et al., 2012; Tobias, 2009). In response to the above evidence, there has been a call for further research exploring the students’ experience of support in general education (Morrison et al., 2009; Mortier et al., 2011; Tippett, 2004). More knowledge is needed, particularly on support to facilitate learning and participation in education, which remains a relatively unexplored area of research (Davis and Florian, 2004; Humphrey and Lewis, 2008; Humphrey and Parkinson, 2006). This qualitative study adds to the body of knowledge by focusing on the experience of support that influences learning from the perspective of individuals with AS and ADHD in general education. Based on sociocultural theory, learning is in this study defined as an occurrence in the interaction between the individual and the cultural and historical contexts in which it appears. At the center of this theory lie the social processes where learning takes place in a specific environment (Lave and Wenger, 1991; Säljö and Wyndham, 1993). In this study, this refers to the students’ experiences of interactions with their classmates, peers, and teachers. This study departs from the students’ experiences of reaching the goals and gaining the knowledge required in elementary and secondary school, in contrast to previous published research from parents and school personnel perspectives. Furthermore, there is focus on the participants’ experiences of the support that they described as influencing them in managing the academic, social, and physical aspects of the learning environment at school, such as relationships with teachers and available resources.

Aim This study aims to describe the experiences of support at school among young adults with AS and ADHD and to explore what support they, in retrospect, describe as influencing learning.

Method Hermeneutic framework In order to achieve an understanding of the experience of support at school based on the participants’ descriptions of their previous education, a hermeneutical approach was used (Gadamer, 2004). A central position of hermeneutics is that the researcher has to be aware of his or her own preunderstanding, that is, existing knowledge, values, and experience of the topic of interest, in order to understand other people’s experiences, and in light of that interpret the participants’ accounts of their experiences (Denzin and Lincoln, 2011; Gadamer, 2004). In a hermeneutical analysis, it is acknowledged that participants’ experiences are

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Bolic Baric et al. brought together with the researcher’s to produce a new understanding of the topic of interest (Denzin and Lincoln, 2011). In this study, the first author’s (V.B.B.) pre-understanding consisted of theoretical knowledge and clinical practice in occupational therapy for children and adolescents with disabilities. In addition, being about the same age as the older participants meant that there was an understanding of the educational system of that time.

Recruitment of participants Since there are no official registers of individuals with AS and ADHD in Sweden, four senior administrators in municipality services in the mid-east region of Sweden responsible for providing services to the target group were approached to assist with the recruitment of participants. Staff members working in these services received written and oral information about the study. A purposeful sampling was used to enroll participants (Patton, 2002). Staff members identified eligible participants and informed them about the study based on the following inclusion criteria: the young adults had to be between the age of 18 and 30 years, with a diagnosis of AS or ADHD, based on Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV)1 and/or International Classification of Diseases, 10th Revision (ICD-10) (American Psychiatric Association, 2000; World Health Organization, 1993); graduated from elementary school; and willing and able to communicate their experience of previous education. Individuals with another primary diagnosis or ongoing substance abuse were excluded. There was a strive to achieve gender balance. Details of only the participants who gave consent to participate in the study were passed to the researcher. After referral, the researcher contacted the participants to schedule a time and place for the interview. The recruitment process resulted in 17 interviews in total, ranging from 1 to 2.5 h, with half of the interviews lasting longer than 1.5 h. Based on the inclusion criteria, four participants were excluded, due to not graduating from elementary school, giving a total sample of 13 participants. The richness of the data obtained and the range of experiences that the participants displayed (e.g. age, level of education, and current employment status) were considered as sufficient to answer the research question and explore the diversity of individual experiences. A hermeneutic study aims to provide an in-depth analysis of individual experiences, and such studies tend to rely on small sample sizes facilitating in-depth analysis of the data, which would not be possible with a larger number of participants (Dahlberg et al., 2008; Polit and Beck, 2008).

from 20 to 29 years, with most of them being under the age of 24 years. All participants had attended general education in elementary school. After elementary school their experiences varied, with six of the participants completing high school and three completing high school for individuals with intellectual disabilities. The remaining participants had not completed high school. The participants were participating in daily activities for individuals not gainfully employed or in different labor market policy programs for persons with disabilities. They were living independently or in different residences including group housing and service housing. The majority of the participants received their formal diagnosis after graduating from school, with only four participants receiving their diagnosis during early elementary school.

Interviews Semi-structured interviews were performed by V.B.B. in places that were convenient and chosen by the participants. The semi-structured interview guide consisted of broad, open-ended questions that covered the following: (1) experience of learning in school, (2) experience of support that facilitated and/or constrained conditions for learning in school, and (3) suggestions for support for learning based on earlier experience. The semi-structured interview guide supported using flexible strategies, such as probes and the young adults’ vocabulary when necessary (Harrington et al., 2013). Examples of such probes included the following: “Can you tell me more about that?” and “Could you give me an example of that?” In line with the sociocultural theory of learning, participants were asked to describe concrete experiences they had in school, with regard to the classroom environment, available resources, and interaction with teachers and peers. In addition, if necessary, questions were posed concerning concrete events relating to when they succeeded or failed to manage academic, social, and physical aspects of the learning environment at school. After the interviews were finished, a timeline (Polit and Beck, 2008) was used in cooperation with the young adults to sort the participants’ experiences and significant occurrences in a chronological order from school to their current situation. The timeline facilitated recall and enabled the participants to talk about additional experiences that sprung to mind. Furthermore, the timeline gave V.B.B. the opportunity to check the initial understanding of the experiences while together with the participants organizing the participants’ experiences on the timeline. With the participants’ permission, the interviews were tape-recorded and transcribed.

Participants

Analysis

A total of 13 young adults, 10 of whom were diagnosed with AS and 3 with ADHD, participated in the study. The ages of the participants (seven men, six women) ranged

In order to gain an understanding of the experience of support at school, a hermeneutic analysis and interpretation guided by Gadamer (2004) was used for this study.

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First, each interview text was read by V.B.B. as a whole several times in order to develop an overall understanding of what the participants were describing. Summaries of key points for each interview were made. Thereafter, the text was read once again, and segments of text that provided a description of the participants’ school-related experiences, experience of support at school, and what support they, in retrospect, valued as important for learning were extracted. The participants’ experiences of support were then compared with each other and differences and similarities were noted (Denzin and Lincoln, 2011). Thereafter, these similarities and differences were explored by searching for patterns in experiences and grouping them in different categories, referred to as sub-clusters. The timeline was used as an analytic tool when analyzing the data for sub-clusters that cut across different settings, such as junior high school (ages 13–15 years in Sweden) and high school (ages 16–19 years in Sweden) (Denzin and Lincoln, 2011). For example, the timeline was helpful in highlighting the participants’ experience of bullying during different educational stages, which peaked in junior high school, as other studies (e.g. Hebron and Humphrey, 2014; Little, 2002; Zablotsky et al., 2014) have found. A subsequent in-depth re-reading of the text involved V.B.B. actively engaging in a dialogue with the text by posing questions to the text, including the following: How did the participant describe their experience of support at school? How did different experiences of support at school fit with each other during different educational stages? Were there opposite experiences of support? Engaging in a dialogue with the text enabled the search for underlying or covert meanings and revising early understandings of the participants’ experiences (Dahlberg et al., 2008). For example, a puzzling finding in this study was that the participants generally described a lack of recognition of their difficulties and lack of support at school, while at the same time the analysis revealed many different descriptions of support that they had received at school. This puzzling finding indicated that the students did not experience available support as helpful and led us to further analyze how the experience of support at school could be understood. In a back and forth process, comparisons were made across and between sub-clusters by searching for patterns. From these comparisons, two overarching themes, referred to as clusters, were developed, namely, “individual learning experiences” and “support for learning.” Finally, relationships between the sub-clusters and clusters were explored. Different interpretations were checked against the participants’ stories to see whether they covered all parts of the data (Dahlberg et al., 2008). For example, one interpretation was that support for learning was merely provided as academic support at school. However, participants described that support for emotional distress was crucial for their learning and provided examples of

such support (or lack of) both within and outside school. In further analysis, an overall understanding of the relationships of clusters and sub-clusters emerged involving that support for learning for students with AS and ADHD aligned academic and psychosocial support.

Establishing trustworthiness Throughout the whole analysis process, peer examination was performed by the co-authors (K.H., A.K., and H.H.), who are experienced researchers in qualitative methods, and there were seminars with fellow PhD students (Krefting, 1991; Patton, 2005; Polit and Beck, 2008). A reflective journal was used throughout the study to note all previous knowledge that V.B.B. was consciously aware of having and observations such as body language and environmental distractions that occurred during the interviews (Krefting, 1991; Patton, 2005). Using the timeline (described above) allowed the participants to immediately provide feedback on V.B.B.’s initial interpretations (Krefting, 1991; Patton, 2005). Throughout the analysis, K.H., A.K., and H.H. were involved in reading the transcripts in order to broaden V.B.B.’s perspective and to critically question V.B.B.’s understanding of the text (Gadamer, 2004). Detailed descriptions of the selection and characteristics of the participants, data collection, and process of analysis are provided, with the intention to enable the reader to assess how transferable the results are to other contexts (Patton, 2005; Polit and Beck, 2008).

Ethical considerations Ethical approval was granted by the Regional Ethics Committee in Linköping, Sweden (Dnr 2010/292-31). V.B.B. and staff members in the services gave all participants both oral and written information about the aim and how the interviews would be performed. Consent was given to both the staff members and V.B.B. The written information stated that participation was voluntary and that the participants were able to withdraw from the study at any time, without any explanation. To ensure confidentiality, the names of the participants have been altered in the study. It was also made clear in the information that data would be published in scientific papers and in professional and client organization journals. All recorded and transcribed interviews were stored in locked file cabinets. Retrospective interviews as used in this study enable young adults with AS and ADHD to recall and reflect upon their experiences of support after some period of time. This allows them to distance themselves from feelings of a potentially sensitive nature, which they might have experienced at school (Schwarz et al., 1994). Nevertheless, remembering past events, even after a period of time, might evoke feelings of stress and emotional distress in some individuals. Therefore, the strategy was to discontinue the

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Bolic Baric et al. Overall understanding

Support for learning- aligning academic and psychosocial support

Clusters

Individual learning experiences

Support for learning

Sub clusters

Difficulties with learning

Small groups Individualized teaching methods

Difficulties with social relationships and emotional well -being

Teachers who care Emotional and practical support

Figure 1.  An overview of the overall understanding of sub-clusters and clusters of the forms of support that influence learning in school.

interview and ask staff members to support the participant, if needed. However, it was not necessary to apply this strategy during the interviews.

Findings The participants’ experiences of support influencing learning are interpreted as aligning academic and psychosocial support, which was made up of two clusters: (1) individual learning experiences, including difficulties with learning, difficulties with social relationships, and emotional wellbeing and (2) support for learning, including small groups, individualized teaching methods, teachers who care, and emotional and practical support (Figure 1). The quotes are presented using pseudonyms found in Table 1.

Individual learning experiences Difficulties with learning. Prominent in the participants’ description of school, particularly, junior high school, was a dark and negative picture associated with feelings of meaninglessness, boredom, and most often repression of bad memories. A wide range of difficulties, including difficulties with certain subjects at school (such as literacy and maths), failure to complete homework, difficulty in concentrating, and sensory overload problems, were expressed as being almost omnipresent. In the following example, Mia talks about her difficulties with subjects at school: I remember having a hard time learning things, especially maths, which I still struggle with. I failed in maths in high school so it has always been difficult for me. Yes, I think I find it difficult to learn things.

Other participants described sensory challenges that turned the classroom environment into a struggle: Mmm, I have always found it difficult if there are sounds, for example sounds from fans and air conditioners or such. I can concentrate on the noise from the air conditioner and completely lose concentration of anything else. (Samuel)

The analysis shows that the participants’ difficulties with schoolwork increased with age, which seemed to be related to the increasing demands on study pace, independence, and grades. One striking aspect of the participants’ accounts of their school experience was the amount of effort needed to manage school. This created a feeling of reluctance toward school, with some participants frequently skipping school and dropping out of high school. Difficulties with social relationships and emotional wellbeing.  School was permeated with difficulties in social relationships with peers and difficult emotional experiences, including anxiety and depressed mood. These influenced emotional well-being in school and were found to influence the participants’ learning ability. The analysis demonstrated that social interaction with peers was characterized by misunderstanding and a sense of being excluded, ignored, and rejected by peers, often with prolonged bullying. The bullying was of varying severity and regularity, ranging from verbal to physical bullying. It often peaked during junior high school and was described as influencing the sense of belonging in school. In the following example, Thomas describes how bullying affected his self-esteem negatively, as well as his motivation for learning: I didn’t feel particularly desirable or worthy as a person. Like, I didn’t feel like a proper human being. It feels as if you’re lying on the ground and everybody’s just stepping on you. Like a pedestrian crossing. Because I just felt so depressed, that I just sat there even though I didn’t want to and couldn’t stand it, I just sat there, just to try to make time pass.

Thomas highlights that the relentless bullying of which he was a victim influenced his motivation for schoolwork and resulted in a sense of reluctance toward school. A frequently mentioned reason for being bullied was that the participants identified themselves as being “a bit different” or “odd,” referring to indifference in social interaction, especially with peers, and seeking solitude, which according to them made them easy targets for bullies. In the following example, Maria explains why she perceived herself as being different from others:

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Table 1.  Description of the participants (n = 13) according to sociodemographics. Participants

Sex

Age (years)

Diagnosis

Highest level of education completed

Current employment status

Current living status

Mia

F

20

AS

Elementary education

Living together with parents

Daniel

M

20

ADHD

Alexander

M

21

AS

Secondary school for individuals with learning disorders Secondary education

Labor market policy programsa Labor market policy programs

Rebecca

F

21

ADHD

Elementary education

Emma Samuel Sally

F M F

22 22 22

AS AS ADHD

Jacob

M

23

AS

Secondary education Secondary education Secondary school for individuals with learning disorders Secondary education

Thomas

M

23

AS

Elementary education

Probationary employmentd Daily activities

Jasmine

F

24

AS

Elementary education

Daily activities

Peter

M

28

AS

Daily activities

Maria

F

28

AS

Secondary school for individuals with learning disorders Secondary education

Jimmy

M

29

AS

Secondary education

Labor market policy programs Enrolled at a folk high schoolc Daily activitiesc Daily activities Daily activities

Labor market policy programs Labor market policy programs

Residence with special services for adults or other specially adapted housingb Living together with parents Residence with special services for adults or other specially adapted housing Living together with parents Independent living Residence with special services for adults or other specially adapted housing Independent living Residence with special services for adults or other specially adapted housing Residence with special services for adults or other specially adapted housing Independent living Living with partner Independent living

AS: Asperger’s disorder; ADHD: attention deficit hyperactivity disorder. aParticipating in different labor market policy programs for people with disabilities that entail reduced working capacity provided by the largest national government agency providing placement service for work in Sweden. These programs involve individually adapted measures, such as a probationary period of employment in order to support people to find work or become self-supporting. bResidence with special services for adults or other specially adapted housing refers to different residential arrangements including group housing and service housing. cFolk high schools are independent adult education colleges with courses that can be oriented toward individuals with AS and ADHD. dDaily activities are a form of occupation for people with disabilities regulated by the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (LSS). Daily activities should not be regarded as a form of employment, that is, as paid work.

I’ve never felt that I belonged anywhere or with classmates. I have always had totally other interests and yes, I enjoyed being by myself and doing things alone, with myself. I did not have friendships that worked like, well, friends that you can hang out with and do things with.

Other participants emphasized that they never really understood why they were perceived as different, and this was considered as being a major cause of emotional distress and influencing learning negatively. Furthermore, insufficient and temporary measures against bullying were described as resulting in increased bullying and negative peer reactions. The analysis revealed that school was perceived as a place of insecurity and discomfort, which negatively influenced self-esteem and led to even more anxiety

and depressive emotional experiences. Many participants either withdrew from social situations or acted out verbally and/or physically.

Support for learning Small groups.  In elementary school, support was often provided in small groups (comprising three to five students) or individually outside of the general classroom. The support provided ranged from spending part of the day outside of the regular classroom to attending small groups throughout the school day. Small groups are not a prominent feature in the participants’ stories about high school, except for those participants attending educational services (e.g.

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Bolic Baric et al. introductory courses for students not yet eligible for high school), where the classes were smaller. Participants were often placed in small groups because they were struggling in certain subjects, had difficulties concentrating in noisy environments, and were falling behind with their schoolwork. Indeed, attending small groups was considered support in itself and of most benefit to those participants who were easily distracted. However, attending small groups without individualized support for learning was perceived as insufficient for addressing the participants’ difficulties in school, as the following example illustrates: Mmm, well some said that I could kind of go to another room and do the assignments. I was allowed to do that, but that didn’t provide the right support anyway. Of course I could be in a quiet room but I wanted to have more support from those who knew what this was all about and who could give me the right help. Just going to another room, that’s not the best support in the world. (Mia)

Here, Mia emphasized that just attending small groups was not considered to be qualified support. She advocated support based on her needs from qualified personnel with knowledge of the difficulties she faced and how it influenced learning. Thus, small groups in themselves were not perceived as sufficient support for learning. Individualized teaching methods.  The analysis demonstrated that the participants valued differentiated teaching methods, where teaching was based on the students’ individual ways of learning. These comprised diverse methods for giving instructions, different assessment strategies and modified assignments based on individual preferences, and the teacher being open to students working at their own pace. For example, Thomas demonstrated the value of an individualized schedule that he developed with a teacher while enrolled in the introductory course (as he was not eligible for high school): Instead of saying, “now we have two semesters ahead of us,” and then “We’ll have a maths textbook, a Swedish textbook, and an English textbook” all at the same time, making everything seem endless, we made a schedule where we counted how many tasks there were in the maths textbook, or how many chapters there were, or how many days were left in the semester and then we calculated like, I would have to do these four tasks in the maths book today. That way, we could make a plan for that day.

This highly individualized schedule broke down school assignments and material into more manageable units, covering each school day instead of the whole semester. This enabled Thomas to predict what could be expected from every school day. When asked how this influenced his schoolwork, Thomas described that everything became much easier:

Eh, somehow, it was less stressful and I could let go of thoughts of when assignments had to be finished, how many assignments that had to be finished, and when you don’t know, you just think of when and how. With this (schedule), I knew that I had to do this assignment and then I could take the next, and then I just felt calm.

Thomas described that the schedule supported him in planning and organizing his schoolwork as he knew what he was expected to hand in or do. Furthermore, the schedule provided support and guidance for planning and managing time by giving the due dates for assignments, which made him feel calm. The students also appreciated using technology such as computers and MP-3 players when taking exams, which reduced difficulties with handwriting and increased their concentration by screening out sounds and voices. One participant described the advantages of using a computer for schoolwork: Because we had computers many things were done on the computer. There were hardly any handwritten exams, instead they were typed on the computer. That suited me. All lectures were like that too. They (the teachers) had their own computers and a projector to show a PowerPoint presentation about what our tasks were, and you could see right in front of you what needed to be done. (Mia)

On this occasion, the computer was used both for exams and for instructional purposes since it allowed the student to visualize the instructions and to obtain a better grasp of the content. In addition, the participants valued learning environments in which the teacher allowed them to choose the content and form of learning, based on their interests. This was described as facilitating learning and motivation for schoolwork. Provision of choice based on interests is, for example, realized after leaving junior high school where students are able to select their own subjects and courses, thereby making learning more meaningful. However, despite providing examples of support, the analysis demonstrated that individualized teaching methods only occurred occasionally, did not permeate the students’ education, and were associated with specific teachers. Participants also appreciated being involved in determining what kind of support they needed and wanted. However, students’ involvement in determining what support they needed and wanted was also fragmented and depended on specific teachers’ willingness to involve the students. In retrospect, many participants felt that increasing knowledge about AS and ADHD could contribute to the development of effective individualized support, based on the distinct needs of this student group. The participants who received their diagnosis after completing elementary and secondary school were utterly convinced that an early diagnosis would have generated more support in school. On the other hand, it appeared that for those participants

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who were diagnosed while still at school, the diagnosis did not make any difference to the support received at school. Teachers who care. A central finding was the importance the students placed on the interpersonal relationship with teachers and other school personnel for learning. Being truly recognized as an individual by teachers was highlighted by participants as important for giving them a sense of belonging at school and influencing learning positively. Participants valued having teachers who were personally involved and interested in the students’ personal lives and who acknowledged them as individuals. Other school personnel who were greatly appreciated were those who took time to listen to the students, supported them, monitored their emotional well-being, and considered how their home lives affected their academic performance. In the following example, Thomas talks about meeting a teacher who showed interest in him: Well, she was interested in me as a person, she was dedicated and interested in my progress, even if I worked partly from home, but she saw me as a person, saw my interests and needs, and enthusiasm and interest.

This teacher was described as being engaged and interested in Thomas’ academic progress and also as acknowledging Thomas as a person with individual needs and interests. Other participants described that they felt cared for when teachers engaged in discovering what influenced their school performance: I think that it is important just knowing that there is somebody who cares. Just knowing that somebody cares, just a little bit by asking “why,” “why did you not do your homework,” or “why are you quiet during the lessons?” Just asking “why” makes you feel a little inspired, and then you may feel that get to grips with schoolwork. (Emma)

In this example, Emma describes that teachers caring for her performance at school motivated her to actually deal with her schoolwork. However, the interpersonal relationships with school personnel were generally characterized by a lack of trusting relationships with teachers. The relationships were instead superficial and impersonal, and merely student–teacher relationships with a focus on completing school assignments. Emotional and practical support.  The analysis demonstrated the importance of emotional support by the participants’ network, for example, parents, friends, and healthcare services, for their self-esteem and for sustaining the effort to graduate from school. Many of the participants had a long history of anxiety, stress, and depressive mood that influenced their emotional well-being at school and the ability to concentrate on learning. Parents and friends were mainly described as providing emotional support, that is, concern,

affection, and encouragement, all of which were important for managing challenging situations, such as bullying, failure, stress, or anxiety. In the following example, Emma talks about the support provided by her parents, which enabled her to graduate from high school: … then by and by, I just felt worse; worse and worse and during high school I thought of dropping out many times, but my mom told me, “You need to graduate, you need to get your grades,” so I thought I’d carry on. Actually, that’s what they often say when I tell them (her parents) “I feel kind of so-so, yes, but try; it’s just a matter of making a phone call if it doesn’t work out.”

Emma described her parents’, particularly her mother’s, encouragement to continue high school to receive a diploma certificate as important, both for helping her to graduate from high school and for providing a sense of emotional support as she knew that she could always call them when needed. Similarly, the participants described the importance of friendship to prevent bullying, the negative emotional consequences of being bullied, and the sense of belonging at school. For example, high school offered chances to develop new peer relationships and establish friendships based on shared interests. Difficulties with social relationships with peers tended to take up less space in their stories after they had left junior high school. In addition, the participants also emphasized the need for support from the school health services or the healthcare services in order to manage emotional distress. This was described as necessary to help them meet their educational goals. One of the participants expressed a desire for support for emotional distress from a counselor or a psychologist in school. However, support from both the school health services and the healthcare services were described as difficult to access. He described the lack of support as follows: No, I received nothing at all. I received nothing like that. I met with a school counselor on a few occasions, but that was more to get a certificate (for disability compensation), so to speak. (Jimmy)

The received support was described as being both occasional and related to receiving a certificate in order to obtain disability compensation, rather than support for the sake of the participants’ emotional well-being. Some participants had occasional access to support from the counselor connected to the school health services or the healthcare service for a limited time during their school years. In general, our analysis demonstrated that various experiences of being questioned by physicians and misunderstood or interrupted healthcare chains were described as resulting in insufficient support or difficulties accessing adequate support. Besides emotional support, practical support, primarily provided by parents to manage homework and waking up

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Bolic Baric et al. the participants in time for school, was described as crucial for managing school and for meeting educational goals. Parents were also advocates for their children in communication with the educational system by sharing their children’s perceived difficulties and needs. Friends and partners could, for example, give the participants advice and information about options available in secondary school and support available measures, thus preparing the participants for what to expect.

Support for learning—aligning academic and psychosocial support The results revealed that students with AS and ADHD experienced difficulties at school that involved academic, social, and emotional conditions which could influence learning. Our findings indicate that academic support, combined with support for social relationships and emotional well-being at school, seemed to be crucial for the students’ learning process. Accordingly, from the students’ experience, our findings show that academic support, for example, differentiated teaching methods, needs to be combined with social and emotional support, such as trusting relationships with teachers, in order for the support to be effective in the learning situation. However, it appears that support at school was mainly organized to support academic performance. Support addressing social relationships at school and emotional well-being seemed to be overlooked, both by the school and the healthcare service, although students’ well-being seemed to influence learning. The participants struggled to make the schools and healthcare professionals recognize their emotional difficulties, and support was almost non-existent or only occasionally provided during their school years. Thus, the overall understanding shows that in order to support students with AS and ADHD, it is important to create a learning environment that aligns students’ academic, social, and emotional needs.

Discussion A major finding of this study was that support for learning among students with AS and ADHD seemed to align both academic support and support for social relationships and emotional well-being. This is in line with the conceptualizations of psychosocial conditions for learning in school children without disabilities presented by Ahonen (2010) and Osher et al. (2008), which underlines the importance of social relationships and emotional well-being in connection with the learning process. Support that addresses academic, social, and emotional conditions for learning is important for all students but might be particularly crucial for students with social and emotional difficulties that may influence their learning, such as students with AS and ADHD (Ashburner et al., 2008; DuPaul and Weyandt,

2006; Rommelse et al., 2011; Taurines et al., 2012; Van der Meer et al., 2012). The findings reveal that schools must remain mindful of the role that psychosocial conditions play in learning in order to ensure that support at school aligns both academic and psychosocial support. However, the findings of this study indicate that support at school was mainly organized to support the students’ academic performance. This narrow focus on academic achievement, that is, attainment of educational goals (Adelman and Taylor, 2002; Noddings, 2005; Osher et al., 2008), might limit the schools’ opportunities to address the social and emotional needs of all students. The findings demonstrate that individual learning experiences interplay with psychosocial support in the individuals’ environment during the learning process. This is in line with sociocultural theory, which emphasizes the learning context in which learning occurs, as well as the psychosocial characteristics of that context (Edwards, 2005; Säljö and Wyndham, 1993). Based on the results of this study, it is recommended that current policies and practices must expand their emphasis on improving academic performance to include a comprehensive approach that aligns academic and psychosocial support, in order for all students to have an equal opportunity to succeed at school. This study shows that support for learning in school was described by the students as fragmented and as operating on an occasional basis and being associated with specific teachers. In this sense, the development of continuous support at school that does not rely solely on individual teachers as a driving force requires that those who provide the support are in turn adequately supported by the school organization, in terms of time, resources, and professional development. Considering the emphasis the students put on emotional well-being, a comprehensive policy vision for support in schools could also require increased collaboration between the school health service personnel and teachers in order to create school environments that support students’ personal growth and well-being. Co-operation between teachers, school health services, and healthcare services (Ahonen, 2010; Alerby et al., 2008; Gustafsson et al., 2010; Jakobsson, 2002; Leach and Duffy, 2009) has been described as likely to create conditions for support that targets students’ academic needs, as well as the need for psychosocial well-being. Possible barriers for the implementation of a comprehensive approach to support for learning may be lack of resources in personal training or coordination of support services and lack of time. Our study shows that a crucial aspect of support at school which contributes to learning seems to be the extent to which the academic support provided at school was considered appropriate in relation to individual needs. In line with earlier research, the findings showed that the participants’ experienced difficulties with executive functioning including planning, organization, and time management, areas that have consistently been identified as problematic

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for individuals with ADHD (Barkley, 1997; Barkley et al., 1997; Barkley and Murphy, 2010). This study contributes by providing valuable insight into the students’ experiences of these difficulties at school and what support was perceived as important for addressing these difficulties. For example, Thomas described a schedule that helped him to break down assignments into small, manageable pieces and plan for the timely completion of each assignment. This, in turn, made the educational task manageable and improved his academic performance. In a wider context, executive functioning may be increasingly important for students with AS and ADHD, as they go through the upper secondary school environment into further education and/or work (Langberg et al., 2013). Therefore, interventions that address these difficulties and provide support for planning, organization, and time management should be prioritized for students with AS and ADHD. Furthermore, the findings indicate that academic support provided by teachers, that is, diverse instructional delivery methods and using technology tailored to individual students’ needs and student involvement, was considered to enhance motivation and learning. For example, attending small groups was insufficient in itself unless combined with individualized support for learning. The importance of providing individualized support for students with AS has raised attention previously (Bevan-Brown, 2010; Hellberg, 2007; Sciutto et al., 2012; Tippett, 2004; Tobias, 2009). However, finding ways to provide balanced support for individual needs at a time when financial conditions have deteriorated, resulting in larger classes and more students with special needs in each class, is truly a challenge for the educational system (Giota, 2013; Vinterek, 2006). Recent reviews in the Swedish context focusing on individualization in schools have shown that individualization can concern widely differing things, such as content, work pace, methods, or how the students’ work is valued (Giota, 2013; Vinterek, 2006). An individualized educational setting can focus on one or several of these aspects to various extents, yet the efforts to individualize have been primarily manifested in the pedagogical practice as an increased level of individual work and taking responsibility for one’s own learning and progress. Vinterek (2006) highlights that there is a risk that the vulnerability of students with difficulties in executive functioning including initiating, planning, structuring, and executing their schoolwork, such as students with AS and ADHD, may be accentuated with this shift of focus to the individual student and their responsibility for learning. Furthermore, Vinterek (2006) highlights that the design of the teaching methods seems to be the most important factor influencing progress in learning. This study illustrated some differentiated teaching methods including choices of content and form of assignments and using technology that were considered by the participants with AS and ADHD to increase individualization and facilitate learning. Several of these methods, such as

choice and modification of assignments and material (Ulke-Kurkcuoglu and Kircaali-Iftar, 2010), computerassisted instruction in maths (Mautone et al., 2005), and reading (Clearfield and Stoner, 2005), have been confirmed in earlier studies. The fact that most of the participants (except four) received a medical diagnosis after graduating from school brings to the fore the issues concerning diagnosis and its implications for support in school. The participants who received their diagnosis after graduating were convinced that a diagnosis would have generated support at school. This is in line with earlier Swedish studies emphasizing that a medical diagnosis may be related to support allocation in Swedish schools (Forster et al., 2012; Göransson et al., 2011; Jakobsson, 2002). However, this qualitative study based on 13 interviews showed that receiving a medical diagnosis while still at school did not appear to generate support, based on the four participants’ needs. This is in line with Isaksson et al. (2010), who reported that a medical diagnosis may not ensure adequate individualized support. This may be one possible explanation why the four participants included in this study perceived that there was a lack of support, despite receiving a diagnosis while at school. Further research is warranted to explore the relationship between diagnosis and support at school for students with AS and ADHD, using research designs where findings have the potential to be generalized.

Limitations One of the limitations of this study is the recruitment of the participants. Since there is a lack of official registers on individuals with AS and ADHD in Sweden, participants enrolled at different services within the municipalities were recruited. Their experience of support at school may therefore be different from that of those young adults who are currently enrolled in higher education or employed. Interviewing individuals with AS and ADHD about their experience of support at school may be a challenge due to the speech, language, and communication difficulties associated with the conditions. In this study, one inclusion criterion was that the participants were willing and able to communicate their experience of previous education. Consequently, the findings do not reflect those individuals diagnosed with AS and ADHD with impaired verbal communication. The semi-structured interview guide supported using flexible strategies, such as probes and the young people’s vocabulary in order to adapt the interview situation to each young person’s abilities when this was necessary (Harrington et al., 2013). However, most of the participants in this study did not have difficulty answering open-ended questions. This study draws on a retrospective account of experience of support, which introduces the possibility of fallible memories on the part of the participants. To minimize this, recall was facilitated by the use of

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Bolic Baric et al. a timeline that focused on concrete events that occurred throughout the school years, as concrete events are easier to remember than thoughts and feelings (Repstad, 2007). The study contributes to the development of further knowledge concerning the influence of support on learning, which represents an unexplored area of research (Davis and Florian, 2004; Humphrey and Lewis, 2008). These results highlight the importance of assessing and developing interventions that target difficulties in executive functioning and its consequences for learning for students with ADHD and AS. The research has provided insights from 13 Swedish participants. However, it may be possible to transfer the results to similar international contexts based on the descriptions provided of the participants and the context enabling the reader to judge the applicability (Polit and Beck, 2008). Based on the findings of this study, it seems important to develop individualized support services for students with AS and ADHD that align academic and psychosocial support at school. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Note 1. In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Asperger’s disorder is situated under Autism Spectrum Disorder (American Psychiatric Association, 2013).

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