Whose voices are being heard? A scoping review of research on school experiences among persons with autism and attention deficit/hyperactivity disorder

ABSTRACT

The purpose of this scoping review is to critically examine empirical research that draws on first-person experiences of schooling among students with autism or attention-deficit/hyperactivity disorder (ADHD) as well as to map whose voices are heard in research and where the current knowledge gaps are. The review examined key characteristics of this body of research in relation to the publication context and research methodology. Studies were identified through a systematic scoping review of research published between January 2000 and December 2021 in four electronic databases and a subsequent ancestry search. Fifty-eight articles met the inclusion criteria. The results show an increased research interest in first-person accounts of schooling from 2016 onwards. The autism voice dominated over ADHD and was strongly skewed towards the academically able group. There was an overrepresentation of boys and secondary school children across the studies. Characteristics such as the child’s social class, ethnicity and socioeconomic background were largely neglected, with details associated with the diagnosis being foregrounded. Interviewing was the main method used, and student perspectives were often accompanied by other data sources. The article concludes with a discussion on the silencing of already marginalised sub-groups and the importance of approaching research as an ethical enterprise.

KEYWORDS:

• Experience
• ADHD
• autism, review, school

Introduction

With the 1989 UN Convention on the Rights of the Child (United 1989), children and young people¹ were re-conceptualised as competent social actors and citizens, whose voices should be listened to. This global endorsement of children’s right to be included in decision-making in matters affecting their lives has since also been widely adopted by researchers and is reflected in the plethora of literature and theorising on the topic as well as in the practice of doing research with children. A group that until recently has been invisible here are children with disabilities. Driven by a deficit discourse, having a disability has been implicitly assumed to imply impairment and, thus, incompetency and incapacity as regards participating in research (Curran and Runswick-Cole 2014), rendering children with disabilities unvalued research participants (Cocks 2008). Parents’ and teachers’ perspectives were taken as a proxy for disabled children’s perspectives, leaving children with disabilities unheard in the research (Stafford 2017).

The past decade, however, has seen an extension of this autonomy to the disabled child – a development that recognises the potential of the child with disabilities to make valid and valuable contributions in all aspects of life (e.g. Twomey and Carroll 2018; Curran and Runswick-Cole 2014). Spurring this change is the UN Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations 2006), in particular Article 7, which is solely focused on the rights of disabled children to freely express their opinions in policy, planning and intervention development. While disabled children’s voices are gaining visibility in the research (Rannveig 2015; Runswick-Cole, Curran, and Liddiard 2018), we know little about whose voices are being included.

The focus of the present paper is on two disabilities: autism and attention deficit/hyperactivity disorder (ADHD). Diagnostic rates for both these groups have seen a rapid increase in the last decades (Russell, Scriney, and Smyth 2022; Rydell et al. 2018). They have also both been central in school debates focussing on the challenges to inclusion and participation, particularly in the Global North (Pellicano, Bölte, and Stahmer 2018). Students with these diagnoses have been shown to perform worse academically, have higher rates of school absenteeism and more likely to dropout than their non-disabled peers (Fleming et al. 2017; Totsika et al. 2020; Toft et al. 2021; Lawrence et al. 2021). Despite the fact that the number of children diagnosed with autism and ADHD is increasing and that research has highlighted the difficulties encountered by this group in school, many argue that they have been given limited opportunities to express their views about their own experiences of school (Humphrey and Parkinson 2006; Taneja Johansson 2021).

The lack of these students’ voices is surprising in many ways, given the substantial research attention and funding directed to school-age children with these diagnoses since the early 2000s (den Houting and Pellicano 2019). Driven by a psycho-medical perspective the focus in research has largely been on school-related challenges and limitations arising from diagnostic symptomology and possible interventions and strategies meant to address these problems (Odom et al. 2021; Moore et al. 2018). The dominance of this deficit interpretative frame of analysis is also evident in a few systematic reviews published on ADHD, where the focus has not been on the child’s experiences of school but their lived experience of their diagnosis (Eccleston et al. 2019; Ringer 2020).

The challenges of including children with autism² in research have often been associated with the limitations of the methods used. In recent years, a number of systematic reviews have been published on methods for eliciting the voices of children and youth with autism (Tyrrell and Woods 2020; Tesfaye et al. 2019), even extending across ages (Nicholas, Orjasaeter, and Zwaigenbaum 2019), with one specifically focussed on methods meant to capture educational experiences (Fayette and Bond 2018). In contrast, such discussions are limited with regard to ADHD. Carroll and Twomey’s (2020) scoping review looked at methods used to support the participation of a wider group of children with neurodevelopmental difficulties but seemed to include only one study looking at children with ADHD. Critiquing existing marginalised research practices, there is a push among researchers to develop participatory methods for accessing the first-person perspectives of children with disabilities (Stafford 2017), but the question of the diversity of the population being included in these studies has received limited attention.

In their concluding reflections, DePape and Lindsay (2016) noted that their meta-synthesis on lived experiences of children, adolescents and adults with autism was mainly perspectives of males with autism, and that of individuals with ‘high functioning autism’. The latter is something that has also been observed by Nicholas, Orjasaeter, and Zwaigenbaum (2019), who argue for the need for greater diversity in the sample in terms of communication and cognitive abilities. DePape and Lindsay (2016) also flag the absence of information on sample’s cultural background and socio-economic contexts in the studies they synthesise, but they do not delve further into it.

The purpose of the present scoping review is to critically examine empirical research that draws on the first-person school experiences of students with autism and ADHD as well as to map whose voices are being heard and where the current knowledge gaps are. This review differs from previous reviews as it aims to analyse the key characteristics of this body of research in relation to the publication context and research methodology, rather than synthesising first-person perspectives or identifying methods that can be used to elicit first-person perspectives. Further, it focuses solely on first-person experiences of school and not of the diagnosis. More specifically, the following research questions are examined in the present scoping review:

1. What type of journal is the article published in?

2. Where is the research situated geographically?

3. What sampling routes are used?

4. What are the characteristics of participants included in the research, specifically regarding disability type, school year, gender, ethnicity, socioeconomic background?

5. Which qualitative research designs and methods are used in the studies?

The intention of the present scoping review is not to provide a description of the summative research findings or to assess the quality of the studies in the field, but instead to identify which voices are being foregrounded in the research, the goal being to try to understand the sources of the current knowledge base and determine directions for future research (Pham et al., 2014).

Method

Scoping reviews are a useful tool for effectively mapping how research on a certain topic has been designed and conducted (Munn et al. 2018). A scoping review is applied in the present study to assist in identification of certain characteristics in the articles and their mapping, reporting and discussion. Development of the protocol for the review was guided by the procedure outlined in the Joanna Briggs Institute Reviewers Manual (Peters, Godfrey, and McInerney 2017). The adapted Prisma Flow chart outlines each stage of the literature search process (see Figure 1).

Figure 1. Adapted PRISMA flow diagram (Page et al. 2021) indicating decisions made in study selection.

Identification: developing a search strategy

A search strategy was developed in consultation with a librarian at the University of Gothenburg who assisted throughout this stage. Key search terms were identified by the author using the PICo framework – population, the phenomenon of interest and the context (Lockwood, Munn, and Porritt 2015). The key search terms were developed through an iterative process and were refined with the assistance of the librarian by conducting preliminary searches in different databases covering the social sciences. A combination of Boolean operators (e.g. AND, OR) and truncations (e.g. student*, school*) were used. Search terms are show in Table 1. Pilot searches were conducted in several electronic databases before identifying the final four databases used in this scoping review – Education Resource Information Centre (ERIC), PsychInfo, Education Database and Education Research Complete. These databases were selected for their relevance to the purpose of the present scoping review, which had a clear focus on the school setting.

Table 1. Overview of search terms.

child OR childs OR children* OR student* OR pupil*

ADHD OR ‘attention deficit hyperactivity disorder*’ OR ‘attention deficit disorder*’ OR ‘Attention-deficit/hyperactivity disorder*’ OR ‘Attention-deficit hyperactivity disorder*’ OR Autism OR Autistic OR Asperger* OR neurodevelopmental

experience* OR voice* OR view* OR perspective*

school* OR education

The search was conducted on 15 December 2021 and included research published from 2000 to 2021. Preliminary searches prior to 2000 were found to result in a negligible number of articles. In each database, limitations were set to retrieve only peer-reviewed articles published in English. The first three databases were accessed through Proquest, and the search fields included the title, abstract and main subject. Education Research Complete was accessed through EBSCO and the search fields were title, abstract and subject. The difference in search fields was due to the unique structure of each database and what information was stored under these fields. The search string was a combination of the search terms presented in Table 1. Once the search was completed, the results from each database were uploaded to the reference manager program EndNote to aid in removing duplicates.

Screening process: inclusion and exclusion criteria

Inclusion and exclusion criteria were created to guide assessment of an article’s relevance to the topic of the present review. An article had to meet the following criteria to be included in the final dataset: a) an empirical study, b) at least 50% of the sample were people with autism and/or ADHD, c) a research focus on school or school-age children, d) inclusion of first-person perspectives, experiences, narratives or views on school-related issues, and e) use of a qualitative data collection method with people with autism and/or ADHD.

Articles were excluded if they were: a) commentaries, reviews, thought papers, editorials and thesis summaries, b) mainly covered first-person experiences beyond school settings, c) first-person experiences of diagnosis or medication without any connection to school, or d) solely focused on adult and university education.

After duplicate records were removed, the file was imported into the free-web tool Raayan³ to assist in the first step of screening. Each article’s title and abstract were assessed to see whether it should be included or excluded based on the pre-determined criteria. In the second step of screening, the article’s eligibility for inclusion in the scoping review was assessed. The included articles were uploaded to a reference management tool EndNote for a detailed full-text review based on the inclusion and exclusion criteria. This resulted in the identification and inclusion of 43 articles.

This was followed by an ancestry search conducted to locate articles missed in the database search. The reference lists, one for each of the 43 included articles, were scanned for article titles that were relevant to the theme of the present scoping review and published in 2000 or later. The abstracts of the identified articles were then scanned based on the inclusion and exclusion criteria. If found relevant, the articles were checked to determine whether they were published in peer-reviewed journals. In some cases, it was necessary to download the full text to come to a decision. This process resulted in the identification and inclusion of 15 additional articles. For a complete reference list of the included articles see supplementary material accompanying this paper see Table 2.

Table 2. Overview of the articles.

Author, year	Country	Disability	Year	Gender	Ethnicity	Class	Sampling	Design	Data	Method
AindriÚ (2020)	Ireland,UK	autism	P	-	-	-	school	QL-U	-	Pm
Aubineau and Blicharska (2020)	France, Canada	autism	S	24 M, 2 F	-	-	govt.	QL-U	-	Int
*Bartlett, Rowe, and Shattell (2010)	USA	ADHD	YA	13 F, 3 M	Yes	-	SE unit	QL	-	Int
Blagrave (2017)	USA	autism	P	9 M, 1 F	-	-	teacher	QL-U	O	Mm
*Bolic Baric et al. (2016)	Sweden	autism ADHD	YA	7 M, 6 F	-	-	govt.	QL	-	Int
Bradley and Male (2017)	UK	autism	P	4 M	-	-	school	QL-U	P, T	Mm
Brede et al. (2017)	UK	autism	S	8 M, 1 F	Yes	Yes	SE unit	MM	P, T, DT	Mm
Carrington and Graham (2001)	Australia	autism	P & S	2 M	-	Yes	teacher	CS-I	P	Int
Carrington, Templeton, and Papinczak (2003)	Australia	autism	S	4 M, 1 F	Yes	-	teacher	CS-I	-	Int
Connor (2000)	UK	autism	S	15 M, 1 F	-	-	teacher	QL-U	T	Int
Costley et al. (2021)	UK	autism	S	11 M, 7 F	-	-	govt.	QL-P	-	Int
Daniel and Billingsley (2010)	USA	autism	S	7 M	-	Yes	multiple	QL	P, T, O, DT	Int
Danker, Strnadová, and Cumming (2019)	Australia	autism	S	15 M, 1 F	-	-	school	QL-U	-	Pm
Dann (2011)	UK	autism	P to S	5 M, 1 F	-	-	SE unit	QL	P, T	Int
de Verdier, Fernell, and Ek (2018)	Sweden	autism	P & S	3 M, 3 F	-	-	other	QL	P, T, DT	Int
*Dunne and Moore (2011)	UK	ADHD	YA	1 M	-	-	-	Na	P	Int
Fortuna (2014)	UK	autism	P to S	3 M, 2 F	-	-	-	MM	P, T	Mm
Gibbs (2018)	Australia	ADHD	S	6 M	-	-	-	CS-I	-	Mm
Gibbs, Mercer, and Carrington (2016)	Australia	ADHD	S	6 M	Yes	-	other	CS-I	P, T, DT	Mm
Goodall (2018)	UK	autism	S	10 M, 2 F	-	-	SE unit	QL-P	-	Mm
Goodall (2019)	UK	autism	S	7 M	-	-	SE unit	QL-P	-	Mm
Goodall (2020)	UK	autism	S	10 M, 2 F	-	-	SE unit	QL-P	-	Mm
Goodall and MacKenzie (2019)	UK	autism	S	2 F	-	-	SE unit	QL	-	Int
Hamilton and Astramovich (2016)	USA	ADHD	P	1 F	-	-	other	CS-I	P, T, O, DT	Int
Hannah and Topping (2013)	UK	autism	P to S	8 M	-	-	Govt.	MM	P	Mm
Hay and Winn (2005)	Australia	autism	S	7 M, 2 F		-	school	CS-S	P, T	Mm
Healy, Msetfi, and Gallagher (2013)	Ireland	autism	P	11 M, 1 F	-	-	com	QL-U	-	Int
Hebron and Bond (2017)	UK	autism	S	4 M	-	-	school	MM	P	Int
Hill (2014)	UK	autism	S	-	-	-	-	QL	-	Pe
Honkasilta and Vehkakoski (2019)	Finland	ADHD	P to S	1 F	-	-	com	Na	P	Int
Honkasilta, Vehkakoski, and Vehmas (2016)	Finland	ADHD	S	11 M, 2 F	-	-	com	Na	-	Int
Howard, Katsos, and Gibson (2019)	UK	autism	P and S	10 M, 1 F	Yes	-	multiple	QL	-	Int
Hummerstone and Parsons (2021)	UK	Autism, ADHD	S	11 M, 1 F	Yes	-	teacher	QL-P	T	Mm
Humphrey and Lewis (2008a)	UK	autism	S	-	-		school	CS-S	T, O, DT	Mm
Humphrey and Lewis (2008b)	UK	autism	S	-	-	-	school	CS-S	-	Mm
Kendall (2016)	UK	ADHD	S	7 M, 5 F	-	-	com	QL-U		Int
Lamb, Firbank, and Aldous (2016)	UK	autism	S	4 M, 1 F	-	-	school	CS-S	-	Pe
Ljusberg (2011)	Sweden	ADHD	P	5 M	Yes	-	SE unit	QL-U	-	Int
McLaughlin and Rafferty (2014)	UK	autism	S	5 M, 1 F	-	-	school	QL-U		Int
Moyse and Porter (2015)	UK	autism	P	3 F	-	-	-	CS-I	O	Mm
Myles, Boyle, and Richards (2019)	UK	autism	S	8 F	-	-	teacher	QL	-	Int
Neal and Frederickson (2016)	UK	autism	S	5 M, 1 F	Yes	-	school	QL	-	Int
O’Hagan and Hebron (2017)	UK	autism	S	3 M	-	-	SE unit	CS-I	P, T	Int
Padilla-Petry, Sòria-Albert, and Vadeboncoeur (2018)	Spain	ADHD	S	6 M, 4 F	-	-	other	QL	-	Int
Poon et al. (2014)	Singapore	autism	S	3 M 1 F	-	-	school	QL-U	-	Int
Qi and Wang (2018)	China	autism ADHD	S	3 M	-	-	school	MM	T, O	Int
*Reis, Gelbar, and Madaus (2021)	USA	autism	YA	27 M, 9 F, 4 other	Yes	-	SE unit	CS-I	DT	Int
Saggers (2015)	Australia	autism	S	7 M, 2 F	-	-	school	QL	-	Int
Saggers et al. (2017)	Australia	autism	S	9 M, 1 F	-	-	mutiple	QL	-	Int
Saggers, Hwang, and Mercer (2011)	Australia	autism	S	7 M, 2 F	-	-	school	QL	-	Int
*Taneja Johansson (2021)	Sweden	ADHD	YA	6 F, 3 M	-	-	multiple	CS-I	-	Int
Tippett (2004)	New Zealand	autism	P & S	3 M	-	-	com	CS-I	P, T	Int
Tobias (2009)	UK	autism	S	-	-	-	SE unit	QL	P	Fg
Warren, Buckingham, and Parsons (2021)	UK	autism	P	5 M	-	-	SE unit	QL-P	T	Pm
Wiener and Daniels (2016)	Canada	ADHD	P	9 M, 3 F	-	-	-	QL	DT	Mm
Wu et al., (2019)	USA	autism	S	2 M	Yes	Yes	school	CS-I	T, O, DT	Int
Yessick et al. (2020)	USA	autism	P	4 M	Yes	-	SE unit	QL-U	-	Int
Zilli, Parsons, and Kovshoff (2020)	UK	autism	S	4 M	Yes	-	other	CS-S	T	Pe

Note: Key.Year: P= Primary, S= Secondary; Research design: QL=Qualitative, QL-U = Qualitative unstated, QL-P= Qualitative participatory, CS-I= Case study individual, CS-S=Case study school, Na= Narrative, MM=mixed methods; Sampling: SE unit= special educational unit, com= community support groups, govt.= government authority; Data: P= parent, T=teacher, O=observation, DT=document or testing; Method: Int= Interview, Pm= Participatory methods, Pe= Photo-video elicitation, Fg= Focus group, D=Diary, Mm=Multiple methods; Young adult studies are marked with an asterix.

Charting and analysing the data

The 58 articles that met the inclusion criteria were then systematically mapped and analysed. This was a two-step process. Step 1 involved extraction of the information as provided by the author, and Step 2 coding of that information based on a pre-determined classification or conventional content analysis (Hsieh and Shannon 2005). A data extraction sheet was developed to chart information on the following main categories: 1) descriptive characteristics of the study, 2) sample-related characteristics, and 3) method-related characteristics. Details regarding the procedure are provided below.

Descriptive characteristics

The articles selected for inclusion were categorised first based on year of publication, journal of publication, journal subject area (as catalogued in the database), country context of the study, and the main disability group/s in focus (autism and/or ADHD). In the latter case, sub-categories of autism, such as high-functioning autism and Asperger’s syndrome, were noted and then categorised as autism.

Sample-related characteristics

The sampling path was identified and was then subject to quantitative content analysis to identify the main routes through which the sample was accessed. The main sampling routes identified were through a school, a special educational setting (in or outside school), a specific teacher/special educator, community support groups, government authority, multiple routes and other.

The sample size was also noted; in three studies other disability groups were part of the sample. For these, both the specific number with autism and/or ADHD was noted, along with the size of the entire sample.

This was followed by extracting the characteristics of the sample on both the individual and group level (limited to individuals with ADHD or autism in the sample). The initial focus was on extracting information on the following variables: gender, age, school year/educational stage, ethnicity and socioeconomic background/social class. In some studies, only age was provided and in others school year. Age and school year were re-categorised based on primary, secondary, using the authors’ categorisation or adjusted based on the following age outline: primary school, grade 1–6, 6 to 11 years; and secondary school, grade 7–11, 11 to 16 years.

Other individual descriptors provided for the sample in each article were also extracted. The latter list of descriptors was analysed using content analysis and grouped into the following themes: diagnosis related, support at school, statement/plans, treatment/therapy, performance-related tests, specific child characteristic like special interest, emotions, etc., and other. ‘Other’ also included all retrospective studies in which the current level and place of education or current occupation was often provided.

Method-related characteristics

Under this category, four aspects were focused on: a) Research design – the authors’ description of the design was noted; then these descriptions were subject to content analysis and the following design types were identified: qualitative -stated/unstated, qualitative-participatory, case study-individual, case study-school, narrative and mixed methods. b) If the data in the article were part of a larger study, it was coded as ‘yes’ and if not as ‘no’. c) Data collection methods in which the individual with autism or ADHD was actively involved. The methods were extracted as described and then at a second stage coded as interview, participatory methods, questionnaire, photo/video elicitation, focus group, diary and multi-method. d) Other data sources included in the study (beyond those directly involving persons with autism and ADHD) were classified as parents, teachers, observations, school documentation and testing, and other.

Table 2 provides an overview of the 58 articles included in this review along with key descriptive, sample- and method-related characteristics.

Results

Between 2000 and 2010, there was a range of 0 to 2 articles published per year, as shown in Figure 2. On average, one article was published per year during this period, with no articles published in 2002, 2006 and 2007. From 2011 to 2015 there was a slight increase, with 2.4 articles published per year on average. While 2011 and 2014 had 4 articles, none was published in 2012. A sharp increase was noted in 2016, with 8 articles published in the field of interest. Since then, 5 to 7 articles were identified for every year. The strong upward trend in publications is evident in that 60% of the identified articles in the scoping review were published between 2016 and 2021, which is last 6 years of the time window for the present review.

Figure 2. Number of articles published each year differentiated according to diagnosis.

Journal of publication and journal subject area

A total of 36 journals were represented in the included studies; these are from the fields of education, psychology and medicine. The three journals with the most publications were European Journal of Special Needs Education (n = 6; 10%), Educational & Child Psychology (n = 4; 7%) and Educational Psychology in Practice (n = 4; 7%). Of the remaining journals, three had three included articles each, six had two included articles each and the remaining 24 journals had one included article each.

More than half of the articles were published solely within the subject area education (n = 32). Within this area, the majority were from the field of special and inclusive education (n = 22), but mainstream education journals and practitioner journals were also represented. Following educational journals were articles published in cross-disciplinary journals, where education was one of the subject areas, either along with psychology (n = 6), medical sciences (n = 4), or both medical sciences and psychology (n = 3). Close to 23% of the articles came from purely medical (n = 9) or psychology journals (n = 4).

Country context of the study

The identified articles spanned across 13 country contexts. Two articles were cross-country and focused on shared aspects such as language (France and Quebec in Canada; Republic of Ireland and Northern Ireland), making it 60 countries represented in the 58 articles in the present review. Forty-eight percent of these were from the United Kingdom (n = 29), followed by 15% (n = 9) from Australia and 12% (n = 7) from the US. Seven percent were from Sweden (n = 4) and 2 articles each from Finland, Republic of Ireland and Canada. The remaining countries were France, Spain, New Zealand, Singapore and China, each represented in one article. There was a clear dominance of English-speaking countries represented by 67% of the articles, negligible representation from Asia and none from South America or from the African sub-continent. Two plausible reasons for this overrepresentation are the English-language criterion for inclusion in the present study and the publication culture, which is dominated by the Anglo-Saxon countries (Singal, Lynch, and Johansson 2019).

Group/s in focus

More than three-quarters of the articles (78%) included persons who were described as having some form of autism diagnosis or as autistic. Within the group autism, there was a clear dominance of individuals with the earlier diagnostic category Asperger Syndrome and those stated as having ‘high-functioning autism’ or described as having relatively high cognitive and/or communicative abilities. People with ADHD were only present in 26% of the articles. Two articles included the group autism and ADHD, one from China with a sample of three (Qi and Wang 2018) and the other from Sweden (Bolic Baric et al. 2016). However, in the Swedish article there was a substantially higher number with autism (10 with autism and 3 with ADHD). The first-person perspectives of people with ADHD were much less likely to be accessed in comparison to those of individuals with autism. The first article drawing on an ADHD voice on school was published in 2010, as shown in Figure 2. Almost 75% of the articles focusing on ADHD were published during the last 6 years.

Paths to sampling and sample size

The samples of persons with ADHD and autism in the included studies were obtained using diverse methods. The most common two routes were via schools (n = 15, 26%) and specialised educational units – usually part of a mainstream school (n = 13; 22%). Following this, in six articles, participants in the sample were contacted via teachers, such a special educator, special educational needs coordinator or teachers working with a specific group of students. Another approach was to make contact through existing community support groups for ADHD and autism (n = 5; 9%). Four articles went via government bodies, the municipality and local authority to identify schools or individuals of interest. Only 4 articles described using multiple methods for getting in touch with their sample, and these included social media, grapevine, school contacts, and support centres. Six of the articles provided no information on sampling. The remaining five articles used a convenience sample, population-based study sample, typical case, chain sampling, or research-practice partnership.

The mean sample size across the 58 studies was 8.4 participants and the median 6. However, it is important to note that studies ranged from a sample of 1 to 40 persons with ADHD and/or autism. In 11 articles, 3 persons or fewer were included in the sample.

Characteristics of the individuals with ADHD or autism mentioned

Educational stage- age

In most cases, the sample was drawn from a secondary school population (60%; n = 35). The plausible reason for this is that older children are seen as better able to express their perspectives verbally (Tyrrell and Woods 2020), and this has also been described as a critical period for students with increased demands and changed expectations in the school environment (Stack, Symonds, and Kinsella 2021).

Seventeen percent (n = 10) of the articles included primary school children. Four articles had a mixed group of students from primary and secondary school. The remaining nine articles spanned primary to secondary years for the same individuals, of these articles five were based on young adults’ retrospective accounts across all phases of schooling. While the primary school experience is limited in the included studies, secondary school experiences were also largely restricted to mainstream school settings framed within an inclusive education framework rhetoric (Haug 2017), resulting in the voices of children from other educational spaces being left to the periphery.

Gender

Five studies did not provide any information on the gender of the persons included, among these one was published as recently as 2020. While justified for a study with a small sample (AindriÚ 2020), the reason is difficult to ascertain for studies with 26 participants (Aubineau and Blicharska 2020). More than half of the articles included both boys and girls in the sample (n = 31; 53%); 27 of these were conducted on school-age children and four were retrospective studies. However, looking closely at the ratio of boys to girls in the sample, 26 of the 31 studies were dominated by boys, as shown in Only two had more girls than boys, and both these were retrospective studies (Bartlett, Rowe, and Shattell 2010; Taneja Johansson 2021). Three studies had an equal or almost equal number of boys and girls, of which one was also a retrospective study (Bolic Baric et al. 2016), and another had a very narrow focus on students who were blind and had autism (de Verdier, Fernell, and Ek 2018) Figure 3.

Figure 3. The 31 studies with both boys and girls included in the sample, presented in the order of publication.

Of the remaining 22 articles, in 17 (29%) only boys were part of the sample, the most recent of which was published in 2021. Five articles (9%) included only girls, and all were published in recent years, between 2015 and 2019. Three of these studies focused explicitly on girls’ experiences (Goodall and MacKenzie 2019; Moyse and Porter 2015; Myles, Boyle, and Richards 2019), with 2, 3 and 8 girls, respectively, included in the sample, and all three were from the UK context. Apart from this, there were two single case studies of girls (Hamilton and Astramovich 2016; Honkasilta and Vehkakoski 2019). Interestingly, these two studies did not foreground the female experience, but only the ADHD experience.

Not surprisingly, boys were highly overrepresented across the articles, 74% of the articles had only boys or more boys than girls in their sample. One could thus argue that the findings from existing studies largely represent the voice of adolescent males. The dominance of the male voice in research on lived experience of autism across the lifespan has been previously noted by DePape and Lindsay (2016). This gender bias is also well established in the wider research on autism and ADHD across disciplines (Lai et al. 2015) and is also reflected in more school-age boys than girls receiving the diagnoses (Ramtekkar et al. 2010).

Ethnicity

In 79% of the articles, there was no reference to the participants’ ethnicity, either on an individual or group level. While a couple of studies mentioned ethnic composition related to the uptake area of the school (Saggers 2015) and the larger city authority within which the school was operational (Hebron and Bond 2017) to highlight higher numbers of ethnically diverse groups or those with an indigenous background, the relevance of this is questionable when the sample size is just 4 and 9, respectively.

In 12 articles (21%), ethnicity was either explicitly mentioned or in a few cases indirectly implied through the language spoken by participants (e.g. mother tongue), and in all these articles, the samples were clearly skewed towards white/Caucasian participants. Of these, in seven cases this information was provided for the group as a whole (e.g. all were white/Caucasian and spoke the local language). Two articles stated that majority of participants in the study were white, while one of the articles provided this information at the group level, the other study provided a breakdown of the different ethnic groups included. There were only two studies with small sample sizes (2 to 4 participants) that had equal or almost equal Caucasian and other. However, these articles also had a very specific research focus: giftedness (Wu, Lo, and Tsai 2019) and physical education (Yessick et al. 2020). Effectively, there was only one study in the review that described the ethnicity of the sample as heterogeneous, and this study looked at bilingual children with autism (Howard, Katsos, and Gibson 2019). Interestingly, ethnicity was more likely to be mentioned in studies with a focus on ADHD (in 4 of the 13 articles) than in those focused on autism (in 7 of the 43 articles).

Social class and socioeconomic background

Description of the social class or socioeconomic background of the sample was even less likely to be mentioned than ethnicity, with only four articles (7%) in the present review doing so. These articles were spread across the time window of the review (year 2001, 2010, 2017, 2019), and in all cases the sample came solely from a middle- or upper-middle class background. This was often accompanied by a mention of the area the child’s family lived in and/or the parents’ engagement with the child’s learning. Describing their sample, Daniel and Billingsley (2010, 223) stated ‘The boys are from middle-class to upper-middle-class families and live in Virginia in three different university towns surrounded by rural areas’. Similarly, Wu, Lo, and Tsai (2019, 223) described ‘ … both Alex and Darren came from a middle-class background and both sets of parents were highly involved in their son’s learning and school activities’.

Socioeconomic background was taken up in four articles by describing the school catchment area or the composition of the authority or city in which the school was located. Irrespective of description, what is evident across all four articles is the presence of engaged parents, who were in all cases directly involved in the study. Once again, for articles with small sample sizes, this calls into question how representative school or authority descriptors are.

Other descriptors

The most common sample descriptors after gender, age and school year were details associated with the diagnosis. In 57% (n = 33) of the articles, the year of diagnosis, type of diagnosis, who had made the diagnosis, the instrument used for diagnosis, age at the time of diagnosis and/or other diagnosis/comorbidities present were included. This was followed by descriptors related to the school attended in 11 of the articles, where details such as date of enrolment, location of education and type of support were noted. Performance-related tests (n = 7), existing statements and plans (n = 6), medical treatment and therapy (n = 5) were also mentioned in some of the studies. Seven articles mentioned either the child’s interest, difficulties, dislikes, likes, or favourite subject, etc. In retrospective studies with adults (n = 7), current occupation, academic major, level and/or place of education was more likely to be mentioned.

Design- and method-related characteristics

Twenty-nine percent of the 58 articles drew on data collected for a larger study. Four studies were represented multiple times in 9 articles.

Research design

One inclusion criterion for the present scoping review was use of qualitative data collection methods. A qualitative research design was clearly stated in 28% (n = 16) of the articles. In 21% (n = 12) of the articles, the research design was not mentioned and was inferred from the methods used and coded as qualitative. Thirty articles further specified the type of qualitative research design used in the study. Use of individual case studies was a common approach (n = 11, 19%); two of these were also described as ethnographic. This was followed by what was often described as qualitative collaborative, transformative or participatory research (n = 6; 10%). These articles were all published from 2018 onwards, and three were from the same study. Five articles were school case studies and three narrative studies. The remaining five articles had a mixed-method design, and of these, two were longitudinal studies.

Method

Looking closely at the data collection method most commonly used with the individual with autism and ADHD, 88% (n = 51) of the articles used some form of interviewing. Thirty-three articles relied solely on the interview method (57%). Different levels of structure and duration were reported for the interviews. In only 10 of the articles were the participants interviewed more than once, ranging from 2 to 4 times, and in one study, interviews were conducted multiple times over a period of two years.

In 31% (n = 18) of the articles, multiple methods of data collection were used with persons with autism and ADHD. Of these all included the interview method, and quite a few used a range of supports to scaffold the interview. Along with interviews, one or more additional methods were used, including participatory methods like photovoice, drawings, activity based (n = 10), questionnaire (n = 4), photo elicitation/video elicitation (n = 4), focus group (n = 3) and diary (n = 3).

Only a few articles (12%) did not use interviews (n = 7), and these adopted the following methods: participatory methods such as photovoice, storyboard (n = 3), photo elicitation (n = 3) and activity-based focus group (n = 1).

Almost half of the studies drew on data sources other than the individual (47%, n = 27) – a pattern that has been found to hold true for other disabilities as well (Shurr et al. 2021). Twenty-eight percent used at least two sources. Interviews with parents (n = 18) and teachers (n = 19) were the most frequent. Apart from these, observation (n = 8) and documentation/testing (n = 8) were the other common data sources drawn on.

Discussion

The present study used a scoping review to critically appraise the past 21 years of empirical research drawing on the first-person perspective of students with autism and ADHD concerning their schooling, with a specific focus on the publication context and research methodology. Peer-reviewed articles written in English were screened, and 58 articles met the inclusion criteria. There seems to be greater importance given in research to first-person accounts of schooling in recent years, as reflected in the number of articles identified from 2016 onwards. This sustained increase in the number of articles published coincide with global attention on persons with disabilities, i.e. the adoption of General Comment No. 4, which articulates the human right to inclusive education as stipulated in the UNCRPD (United Nations 2016). This seems to have had impact on the research in this area, with a spike in articles drawing on first person experiences occurring around this time, which has even been noted in a review study on youth with disabilities (Tesfaye et al. 2019).

The findings from the present scoping review show how certain voices were being more heard in this body of research. The discussion here will reflect on the active and passive choices made by researchers, the implicit effect of these choices and the persisting silences.

Value-laden diagnoses and limited method repertoire

In the present scoping review, the first-person perspectives of people with ADHD were much less likely to be accessed in comparison to those of individuals with autism. Prevalence rates do not explain this discrepancy, as at the population level an ADHD diagnosis is more frequent (Thomas et al. 2015) than an autism diagnosis (Zeidan et al. 2022). The difference can thus be argued to reflect the status given to these diagnoses in society, as well as the perceptions of competency often ascribed to individuals with the respective diagnoses. The positive associations connected to an autism diagnosis as opposed to an ADHD diagnosis are evident among professionals (Russell, Scriney, and Smyth 2022; Ewe 2019). There has been a strong discourse within and beyond research on the significance of developing an understanding of the ‘autistic experience’. In contrast, ADHD has been strongly driven by the ‘disruptive boy’ discourse (Timimi 2005), with little recognition of the individual’s own capacity to reflect on school (Taneja Johansson 2021).

While the autism voice dominated in the studies included in the review, it was strongly skewed towards the earlier diagnostic category of Asperger syndrome and individuals described as being ‘high functioning’. Relegated to the margins was the wider group of verbally and cognitively less able people with autism, whose experiences are often more difficult to capture when there is a strong reliance on interviewing, which was clearly the most commonly used data collection method noted in the reviewed studies. Similar insights regarding the dominance of the use of interviews and inadequateness of the methods adopted have also been raised previously in other reviews, both in relation to children and adults with autism (DePape and Lindsay 2016; Tyrrell and Woods 2020) and also more specifically in relation to children’s mainstream school experience (Williams, Gleeson, and Jones 2019).

Little acknowledgement of intersectionality

In the reviewed studies, children with autism and ADHD tended to be reduced to their diagnosis or label, with little recognition of how their experiences could be impacted by other forms of intersecting diversity. This is particularly worrying if we consider the small sample sizes used across most of the reviewed qualitative studies. This is worth reflecting on, as in the broader research on children and youth with disabilities, the connection between disability and race, culture, social class, socioeconomic background and gender is widely acknowledged (Artiles 2013; Riddell and Weedon 2016), and even more so in relation to autism and ADHD (Moody 2016; Durkin et al. 2017). However, when it comes to research tapping into children’s own perspectives and experiences of school, they seem to be seen as just their diagnosis, reduced to a single identity as evident in multiple individual descriptors provided concerning diagnosis in the reviewed articles. This tendency to neglect other forms of oppression in research which included disabled children’s voices was also noted by Carpenter and McConkey (2012).

In the very few articles in this review that did mention demographic characteristics, they were predominantly Caucasian/white individuals with a middle-class background. Implicit in the silences in the other articles it could be argued is the presence of the same dominant groups, an issue that does require elucidation. This absence of ethnicity reporting in autism research has been shown by Pierce et al. (2014) in a comprehensive review of three main autism-related journals over a six-year period.

In the research focused on school-age children, there is a large gap where the perspectives of girls should be, but it is encouraging to see that this might be changing (cf. DePape and Lindsay 2016), as evident in the increased research during the recent years identified in this review.

Research, an ethical enterprise

Levac, Colquhoun, and O’Brien (2010, 7) stressed the importance of not only presenting the findings of a scoping review, but also considering and reflecting on the broader implications of the findings. Taking their advice, I reflect here on the ethical responsibility we as researchers have in relation to the knowledge we create, the discourse that it perpetuates and the stereotypes it reinforces. The perspective embodied in the design of the research, the choices made regarding who is included and through what means, all have far-reaching consequences.

It is critical that we re-orient research enquiry from an over-medicalised impairment deficit approach to looking at the diversity of experiences of children with both autism and ADHD. The voices of children with these diagnoses have largely been relegated to the margins in research on education, overshadowed by medical technocrats (Tegtmejer, Hjörne, and Säljö 2018). This is in stark contradiction to the dominant discourses of inclusion, disability rights and neurodiversity that are frequently forwarded in the field (Pellicano and Houting 2022; Moore and Slee 2012). Drawing on Curran and Runswick-Cole (2014), I argue that ethical research is research that places children’s voices and experiences at the centre of inquiry, moving away from impairment and deficit descriptions and delving deeper into children’s actual experience and concerns. As Carpenter and McConkey (2012, 258) rightly argue, to neglect disabled children’s voices is not only discriminating but also disempowering them.

In the present scoping review, the first-person perspectives on school of certain sub-groups were predominant – the white male with ‘high-functioning’ autism, from a majority ethnic group and middle-class background – only further strengthening the existing stereotype about autism (Jack 2014). Selective voices being heard has other consequences too, in that a rather homogenised description of the individual’s school experience is gradually constructed and disseminated (Taneja Johansson 2021) in practice, policy and further research. These descriptions of first-person school experiences are often accompanied by accounts of the engaged driven parent – who is the facilitator, mobiliser of support and advocate (Wiener and Daniels 2016). However, not all children with autism and ADHD have such parents, and the question this fact raises is how often such children’s voices are heard (Curran and Runswick-Cole 2014). And even more importantly, what are the biases in research that arise from socio-economic, verbal and cognitive homogeneity of participants and for the understanding, support and resources allocated in school and society. Certain voices are thus not only unheard but also in turn excluded from the benefits of research and services.

The routes that lead to participation and the methods adopted can often leave behind groups that are harder to reach. While this is possible to address with meticulous planning and innovative methodologies, the systemic marginalisation of already excluded sub-groups is even more deeply embedded in our structures. As argued by Cascio, Weiss and Racine (2020), the lack of representation of certain groups is not only question of ethics but also of justice.

Limitations

It is important to take note of the limitations of the present scoping review. First, the inclusion criteria of peer-reviewed articles excluded doctoral theses, which could have been a relevant source of information. However, several articles included in the scoping review were based on work from a doctoral thesis. Moreover, as quality was not assessed as part of the scoping review, peer review was a way of ascertaining a certain minimum level of robustness. Second, limiting inclusion to articles written in English may have excluded research in this area published in other languages in, e.g. French, German and Spanish language peer-reviewed journals. Third, as the search was limited to specific databases and complemented by ancestry search, there may have been articles missed that could have been identified using a hand search. Moreover, restricting the searches to mainly educational databases can be considered a limitation, because further searches in medical and psychological databases may have revealed a greater number of relevant studies, but then again this would have further made visible the limited interest in first-person perspectives in educational research.

Acknowledgments

I would like to thank Sofia Gullstrand from the University of Gothenburg library for support with planning and executing the search.

This work was supported by a post-doctoral grant from the Department of Education and Special education, University of Gothenburg

Disclosure statement

No potential conflict of interest was reported by the author.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/13632752.2023.2202441

Additional information

Notes on contributors

Shruti Taneja-Johansson

Shruti Taneja-Johansson is an Associate Professor in Education at the Department of Education and Special Education, University of Gothenburg. In her research she addresses issues of educational inequity among people with disabilities across a range of educational settings and country contexts.

Notes

1. Henceforth, the word children will be used to refer to children and young people.

2. In this article person-first language is used and not disability-first i.e. ‘children with autism’ and not autistic children. As most of the studies included in the scoping review reported here use person-first language, the same approach is reflected in the writing in this article.

3. https://www.rayyan.ai/.