ASD AND DATA GATHERING

Gathering the views of children

and young people with ASD:
a systematic literature review
Beverley Tyrrell and Kevin Woods

According to the United Nations Convention on the Rights of the Child,

children have a right to have their views listened to, and studies have
shown that doing so can improve their motivation and self-esteem.
Accordingly, this systematic literature review sought to investigate
how the views of children with an autism spectrum disorder (ASD),
who have difficulties with social communication, may be gathered.
Searches of electronic databases yielded 20 studies which met the
criteria for inclusion. Semi-structured interviews (SSIs) were popular,
but there is tentative evidence that these are better suited to older, or
more academically able, participants. Some of the evidence suggests
adaptations to make SSIs more accessible to young people with ASD.
Initial evidence has also emerged regarding the suitability of focus
groups and electronic diaries. More focused evaluation by researchers
of the suitability of their chosen data-gathering methods for participants
with ASD would allow broader conclusions to be drawn.

Key words: autism, child, views, review, participation

Introduction
Since the introduction of the United Nations Convention on the Rights of
the Child (UNCRC) in 1989, a continued emphasis on children’s rights has
been seen in national legislation, in subsequent policies, and in research and
professional practice. Article 12 of the UNCRC states that:

© 2020 NASEN
DOI: 10.1111/1467-8578.12311
 ‘the child who is capable of forming his or her own views [has] the
right to express those views freely in all matters affecting the child, the
views of the child being given due weight in accordance with the age
and maturity of the child.’

 (UN, 1989, p. 5)

Legislation and guidance which reflects this article are echoed in many sec-
tors, including those meeting the needs of particularly vulnerable groups.
In the UK, for example, National Institute for Health and Care Excellence
(NICE, 2010) guidelines state that professionals working with looked-after
children and young people should ensure that they ‘participate in policy de-
cisions that affect their life’. Furthermore, NHS (n.d.) guidelines state that
for parents of children receiving medical care ‘advisable to involve children
as much as possible in these decisions [about their care]’. For children with
special educational needs in the UK, it is stated in the Special Educational
Needs Code of Practice (DfE & DoH, 2014) that children, ‘from the early
years’, have a right to ‘express an opinion and to have that opinion taken into
account in any matters affecting them’.

Within schools an emphasis is being placed on promoting the rights of

children in general. More than 4,000 schools across the UK are currently
involved in the UNICEF Rights Respecting Schools Award (RRSA) UK
programme which ‘recognises a school’s achievement in putting the United
Nations Convention on the Rights of the Child into practice within the school
and beyond’ (UNICEF, n.d.). Criteria for these awards include ‘evidence of
pupils being consistently involved in decision making in different contexts,
including in governing bodies, staff appointments, curriculum planning and
evaluating teaching and learning’ (UNICEF, 2015). Furthermore, as is stated
in the UK’s Fifth Periodic Report to the UN Committee on the Rights of the
Child, in ‘England, over 99% of schools have measures in place that enable
pupils to have a say in the running of the school’ (HM Government, 2014).

The possible impact of taking children’s views into account should also be
considered. Patall et al. (2008) reported in their meta-analysis, for example,
that providing a choice to adults or children increased their intrinsic motiva-
tion, the amount of effort they put into a task, and their perceived compe-
tence. Grieber and Nowak (2012), as part of a systematic literature review,
found that benefits for pupils involved in a school council included increased
self-esteem, improved communication skills and a greater sense of agency. A

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school council is typically an elected group of students who represent their
peers, and help in making decisions in the school. Assuming that as members
of the school council, the pupils were able to express their views, and have
them taken into account, this provides good evidence of the benefits of chil-
dren being able to exercise this right. It is also interesting to note that any neg-
ative effects for pupils of their involvement in the school council seemed to
result from students not having as much influence as they would have liked.
This could be seen, therefore, to offer tentative evidence that not having a say
on matters which concern them may have a negative impact on children.

While there seems to be an increased emphasis on promoting the rights of

children in schools, there is some evidence that children with special educa-
tional needs may be less likely to be part of this. Burnitt and Gunter (2013),
as part of their survey of 50 primary school headteachers, asked what they
considered to be important characteristics of school council members. The
participants emphasised that achieving well in all areas of the curriculum was
not very important. This, as the authors state, ‘can be viewed as encouraging
all children to take an active role, regardless of ability’ (Burnitt & Gunter,
2013). They did, however, place a great deal of value on the children possess-
ing strong organisational and communication skills, something which may
limit the extent to which children with special educational needs, who com-
monly have difficulties in these areas, can take part. While it could be the case
that these schools were involving children with special educational needs in
decisions in other ways, it does offer some indication that such children may
not be allowed the same opportunities to express their views.

There is some evidence to suggest that some children with special educational
needs, while they may need a greater degree of differentiation to express their
opinion, can benefit to a greater extent from the sense of agency and moti-
vation which comes from their opinions being taken into account. Gut et al.
(2012), when comparing 23 children with attention deficit/hyperactivity dis-
order (ADHD; 9.4 years old on average) to non-clinical controls, found that
there were stronger associations between achievement motivation and perfor-
mance in receptive language and mathematical thinking tasks in those with
ADHD than controls. Gut et al. (2012) found that the performance of highly
motivated children with ADHD was equal to the performance of controls. It
seems reasonable to hypothesise then that, in general, children who have their
opinions taken into account, and whose successes are therefore more likely to
be linked to their own decisions, are more likely to attribute their success to
internal factors, and so are more likely to be motivated. Therefore, enabling

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 3

children to exercise this right could be even more important for those with
ADHD. It should be acknowledged, however, that this evidence is currently
tentative, due to sample size considerations, as well as potential confounding
variables, such as parenting styles, which may influence both motivation and
academic achievement.

Of children with special educational needs, it may be that children with an

autistic spectrum disorder (ASD) are even less likely to have their views con-
sidered. As autism is considered a social communication disorder by defini-
tion (APA, 2013), children with autism are less likely, particularly at a young
age, to have the strong communication skills described by the headteachers
in Burnitt and Gunter’s (2013) study. With the prevalence of ASD estimated
to be about 1.57% (Baron-Cohen et al., 2009), it seems crucial to investigate
how the views of these individuals can be elicited successfully.

Fayette and Bond’s (2018) systematic literature review gives some indica-
tion of how researchers have elicited the views of young people with ASD.
Limitations of this review, however, include the fact that the authors restrict
their search to qualitative studies, they do not include theses, and they only
include studies with young people aged 11 years and older. This review aims
to extend the findings of Fayette and Bond (2018) by including qualitative
as well as quantitative research, theses in addition to published journal arti-
cles, and research with participants who are younger than 11. Furthermore,
three of the five databases searched in this study differ from those searched
by Fayette and Bond, and participants’ responses to the abstract nature of
the questions presented at interview will be considered, to add further to the
literature.

The aim of this systematic literature review is to investigate methods that can
be used to elicit the views of children with ASD successfully. In this context,
‘successful’ is considered to mean eliciting as detailed and honest a view from
the children as possible. This review focuses on children who would be con-
sidered to be at the ‘high-functioning’ end of the autistic spectrum, as the
methods used to gather the views of those towards the ‘lower-functioning’
end successfully may be significantly different, particularly for participants
with little speech. This review hopes to provide researchers, as well as other
professionals working with children with autism, with a clearer idea of how
to elicit the views of these children. The review aims to answer the following
literature review questions:

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1. What methods have been used to elicit the view of school-aged chil-
dren with ASD?
2. Which methods for eliciting the views of school-aged children with ASD
are most successful?

Methodology
Theses and published studies relevant to the research aims were found through
a systematic search of the electronic databases ERIC, PsychINFO, PubMed
and ProQuest Dissertations and Theses Global. These searches were under-
taken in August and September 2016 with the search terms (voice OR views
OR perspectives) AND (high functioning autism OR mainstream autism OR
Asperger*). This search yielded 746 results. The resulting studies were then
screened against the following inclusion criteria:

1. inclusion of at least one participant who was school-aged (typically

18 years or younger);
2. at least one school-aged participant with a diagnosis of an ASD which
would be considered to be at the high-functioning end of the autistic
spectrum;
3. availability of the study in the English language;
4. inclusion of at least one measure directly asking the opinions of the par-
ticipants with an ASD.

After this initial screening, and the removal of duplicates, 25 studies re-
mained, of which five were Doctoral theses, and three were Master’s disserta-
tions. Following Gough (2007), the quality of each of these studies was then
assessed using one of three frameworks. The frameworks used for each study
were chosen based on that study’s methodology (quantitative/qualitative and,
for quantitative studies, evaluative/investigative). Of the 25 studies, 23 were
evaluated using the qualitative framework, one using the quantitative evalua-
tive, and one using the quantitative investigative framework. The frameworks
used were adapted from those created by Woods et al. (2011). Randall and
Tyldesley (2016, p. 37) also used a version of these frameworks and state that
they are:

‘designed to assess each study for the quality of methodology and data
analysis employed, as well as how well the implications of results are
discussed and ethical considerations’.

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 5

These frameworks contain criteria such as: analysis close to the data, trans-
ferable conclusions (for the qualitative framework), use of manuals and pro-
cedures for monitoring analyses (for the quantitative evaluation framework)
and fidelity checks and appropriate statistical analyses (for the quantitative
investigation framework). For each framework criterion a score of 0, ¼, ½,
¾ or 1 was given. Those studies which obtained two-thirds or more of the
maximum possible score were considered high quality, those studies scoring
less than one-third of the maximum possible were considered low quality,
and the rest were considered medium quality. None of the studies were rated
low quality at this stage.

Six of the initial 25 studies were jointly evaluated for methodological quality
by both authors. Where ratings differed, discussions clarified any necessary
adjustments to the quality evaluation frameworks. On average, the inter-rater
reliability percentage agreements stood at 75%, 67% and 81% before discus-
sions, and 100%, 100% and 97% after discussions, for quantitative evaluative,
quantitative investigative and qualitative evaluations, respectively.

Studies were also rated according to their methodological appropriateness

(Gough, 2007). A high rating was given to studies which described the method
used for gathering the opinions of participants with ASD in sufficient detail
for the reader to be able to replicate it, and where the authors had reflected on
the appropriateness of the method used. Those studies which described this
aspect of the method in sufficient detail, but did not reflect on it, obtained
a medium rating. A low rating was given if the method was not described in
sufficient detail. Five studies were rated low according to these criteria. These
studies were excluded, on the basis that in order to begin to evaluate the use-
fulness of the method used, it is important to have a detailed account of the
method(s). In total, this meant that 20 studies were left (of which seven were
Doctoral theses or Master’s dissertations), and these were included in this
review. Table 1 shows the abbreviations used in the summary table of studies
(Table 2). The ratings for each study, both in terms of the study quality and
methodological appropriateness, are included in Table 2.

The findings of this systematic literature review are described in the ‘results’
section of this article. The implications of these results are then considered in
the ‘discussion’ section.

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 Table 1: Abbreviations used in summary table of studies

Acronym/abbreviation Term

ASD Autistic spectrum disorder

AS Asperger syndrome
CTYI Centre for Talented Youth, Ireland
D. Thesis Doctoral thesis
FG Focus group
FQS Friendship Qualities Scale
HFA High-functioning autism
MPS Mainstream primary school
MSS Mainstream secondary school
M. Diss. Master’s dissertation
P Participant
SPPC Self-Perceptions Profile for Children
SSI Semi-structured interview
SSIS Social Skills Improvement Rating Scales
SSG Social skills group

Results
Quality of the included studies
Of the 20 studies deemed eligible for inclusion in the review, six were judged
to be high quality, and 14 were judged to be of medium quality. Five of the
studies were Doctoral theses, and two were Master’s level dissertations.

When judging the quality of the studies, it was noticed that studies commonly
received less than the maximum score for the criteria ‘evidence of atten-
tion to ethical issues’, ‘negative case analysis’ and ‘evidence of researcher–
participant negotiation. Those studies which were regarded as high quality
were more likely to receive the maximum score for ‘appropriateness of the
research design’ and ‘well executed data collection’. Of those studies which
were considered to be high quality, all received at least half marks for ‘trans-
ferable conclusions’, whereas three of those of medium quality received no
marks for this criterion. Those studies scoring towards the bottom end of the
medium quality range were particularly likely to receive low marks for ‘clear
sampling rationale’.

Context of the included studies

As well as being judged in terms of their quality, the studies were also judged
on the extent to which they described, and reflected on, their methodology.
Studies were rated high if the authors described the method in detail, and

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 7

 Table 2: Summary of studies included in this literature review

8
Participants with Research aims (to Measures of child/young Evaluation of measures Methodological
Study and location ASD Study design explore the…) person’s views used Study quality appropriateness

Beteta (2009) 4 (AS or HFA); Case studies academic, home, SSIs (25–90 mins); Ps occasionally High High
USA females; 15, 17, personal, and 10 mins of casual distracted in public
D. Thesis
18, 19 years social experiences conversation first; places. At least one
interviewer had found open-ended
experience with questions difficult
individuals with AS; at start of SSI, but
Ps chose interview answers became
location longer.
Calder et al. (2013) 8 males, 4 females Case studies extent and nature of FQS (Bukowski et SSI: many said friend- Medium Medium
England (autism); friendships al. 1994): rate ships confusing
9–11 years; MPS perceived qualities – implies some
of best friendship; reflection/detail in
SSIs (5–14 mins) answers; FQS: all
about concept of Ps completed it, P
friendship engagement unclear.
Carrington et al. 4 males, 1 female Case studies understanding and SSIs (20–40 mins); Ps reflect on their Medium Medium
(2003) (AS); 14, 15, 15, experience of questions modified friendships to differ-
Australia

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17, 18 years; MSS friendships if needed to ensure ent degrees; unclear if
Ps understood due to methodology;
articulated desire to
fit in with peers.
Charles (2012) 4 male, 1 female Case study experiences of FG at school FG 3: Ps discussed High High
England (ASD/ AS); Year transition to sec- FG 1: activity based strategies for con-
D. Thesis on ‘Ideal Self’
6; attending MPS ondary school cerns spontaneously;
(Moran, 2001), more inhibited Ps
discussed transition; responded; possibly
FG 2: strategies for more naturalistic
Ps’ concerns; FG 3: than interview.
discussed first term;

© 2020 NASEN
parents prewarned
about session topics
(Continues)
 Table 2: (Continued)
Participants with Research aims (to Measures of child/young Evaluation of measures Methodological
Study and location ASD Study design explore the…) person’s views used Study quality appropriateness

© 2020 NASEN
Cordier et al. 6 (AS/HFA); Pre-experimental Nature and qual- Ps wore iPod Touch for Average signal response Medium High
(2016) 8–12 years; MPS/ ity of social 7 days, completed rate 56.8%; children
MSS experiences short survey able to understand
when signalled; survey.
Australia survey: what they Ps reported study did
were doing, rated not interfere with
enjoyment lives.
Dann (2011) 5 males, 1 female Case studies experiences of SSIs: vignettes, Talking Comprehensive answers Medium Medium
England (ASD); Year 6 transition to sec- Mats (Murphy, elicited; but unclear
ondary school 1998; Murphy & how many Ps quotes
Cameron, 2008). are from.
Dixon and Tanner 2 (AS); 14 and Case studies experiences of SSIs; interviewers had 1 P: difficulty with SSI, Medium High
(2013) 15 years; aca- transition to aca- experience with indi- e.g. not able to reflect
Australia demically focused demically focused viduals with ASD on other people
middle/high high schools knowing about AS;
schools other pupil: more
detailed, but unclear
to what extent.
Hill (2014) 6 (ASD); MSS Case studies MSS experiences Ps took photos of Ps directed interview; Medium High
England places in school diversity in Ps’
important to them; responses; Ps said
unstructured inter- photos enabled more
views: why places detailed answers.
important, any
photos they would
have liked to take

(Continues)

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10
Table 2: (Continued)
Participants with Research aims (to Measures of child/young Evaluation of measures Methodological
Study and location ASD Study design explore the…) person’s views used Study quality appropriateness
Humphrey and 20 (AS); Case studies educational experi- SSIs; pupil diaries 9 Ps completed diaries High Medium
Lewis (2008) 11–17 years; at- ences, practices (choice of recording for at least 2 weeks:
England tending MSS facilitating/con- methods); par- 6 pen and paper, 3
straining learning ticipant feedback on oral, 0 electronic
findings recording; One P:
drawing; SSI: detailed
opinions elicited, but
unclear how many Ps
quotes are from.
Huws and Jones 9 (HFA); Case studies views on their ASD SSIs (35–75 mins); at Flexibility of the inter- Medium Medium
(2008) 16–21 years; AS- diagnosis the college viewer about topics
Wales specific college discussed led to
richer data gathering.
Kirby (2004) 4 (HFA/AS); 9, 14, Case studies social experiences SSIs Comprehensive answers Medium Medium
Canada and USA 19, 42 years elicited from 2 older
M. Diss.
Ps; youngest P strug-
gled to reflect on
social experiences.

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Kunz (2009) 6 males, 1 female Case studies social experiences, SSIs: in P’s home, or Lack of detail in an- Medium Medium
USA (HFA/AS); views on ASD researcher’s office swers about views on
D. Thesis
15–19 years diagnosis, adap- their ASD: said they
tive behaviour did not know much
about it, talked about
it in the third person;
some Ps ‘aloof’ and
‘nervous’.
(Continues)

© 2020 NASEN
 Table 2: (Continued)
Participants with Research aims (to Measures of child/young Evaluation of measures Methodological

© 2020 NASEN
Study and location ASD Study design explore the…) person’s views used Study quality appropriateness
McKeigue (2009) 3 males (AS); 7, Survey (parents/ experiences in MPS SSIs (10–20 mins); vari- Detailed, reflective High Medium
Ireland 11, 12 years; teachers and CTYI ety of locations (e.g. answers.
M. Diss.
registered with only), case café, P’s home)
CTYI; MPS studies
McLaughlin and 6 (AS); in Years Case studies views on ASD SSI: asked ‘What is At least some Ps gave Medium Medium
Rafferty (2014) 10–13; MSS diagnosis, school life like for you in detailed, reflective
UK support, social school?’, with sup- answers.
life, academic plemental questions
progress
Olsson et al (2016) 11 (HFA); Quasi- effectiveness of SSG SSIs (averaging Questions relatively Medium Medium
Sweden 8–17 years experimental training 30 mins): some complex (multiple
visual supports; components); com-
interviewers had prehensive answers
experience with indi- elicited; but unclear
viduals with ASD how many Ps quotes
are from.
Poon et al (2014) 3 males, 1 female Case studies educational SSIs; many questions Descriptions elicited High Medium
Singapore (HFA or AS; experiences in to prompt expansion concerning feelings
12–16 years; Singapore on answers about having ASD,
MSS; 2 in ‘ex- relationships with
press’ streams, peers, experience of
2 in ‘normal’ school; but unclear
whether all Ps able to
express views.
Rogan (2011) 4 males (AS Case studies educational SSIs in Ps’ own homes Comprehensive descrip- High Medium
England or HFA); experiences tions elicited.
D. Thesis
15–17 years; MSS

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(Continues)
12
Table 2: (Continued)
Participants with Research aims (to Measures of child/young Evaluation of measures Methodological
Study and location ASD Study design explore the…) person’s views used Study quality appropriateness
Tobias (2009) 3 (ASD) Case studies views on educational FGs (1 per group); Reflected on issues that Medium Medium
England 15–16 years; support received described and drew students with ASD
7 (ASD) and possible ad- imaginary students: might have – e.g.
14-15 years; MSS ditional support ‘successful’, being bullied; Ps’
‘unsuccessful’ and engagement unclear;
‘with ASD’; made unclear how many Ps
‘toolbox’ of school quotes are from.
support
Weiss et al. (2013) 28 males, 7 females Pre-experimental outcomes of an SSIS (Gresham SSIS: high internal con- Medium Medium
Canada (AS/HFA); SSG: social skills, et al., 2011); SPPC sistency, good test–
6–14 years self-concept (Harter, 1985); 1:1 retest reliability, has
with researcher; been used in other
pre- and post-SSG studies; children’s
engagement with
measures unclear.
Wicks (2014) 7 males (ASD); Case studies views on causes and SSIs (in resource Ps indicated triggers Medium Medium
UK Autism resource extent of, and base): using cogni- for anxiety; some
D. Thesis
bases (part of helpful strategies tive behavioural Ps chose to have

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MSS) for, anxiety framework, visual teaching assistant in
cues adapted from room during SSI; at
Talking Mats least some detailed
(Murphy, 1998); answers elicited, but
teachers checked unclear if from all Ps;
questions suitability 2 Ps chose not to be
before SSI interviewed on the
day – unclear why.

© 2020 NASEN
reflected on the effectiveness of it. Studies were rated medium if they met one
of these criteria. Of the included studies, five were rated high according to
these criteria, and 15 were rated medium.

Ten of the studies were carried out in the UK, four in Canada and/or the
USA, three in Australia, and one each in Singapore, Ireland and Sweden. All
studies included at least one school-aged individual with a (high-functioning)
ASD. Twelve studies included children from within the secondary school age
range (11 to 18 years). Of these, one study included two participants, 10 stud-
ies included four to 10 participants, and one study included 20 participants.
Four studies included participants from the primary school age range (four
to 12 years). Of these, three studies included three to six participants, and
one study included 12 participants. Four studies included participants from
both the primary and secondary age ranges. Of these, three included four to
11 participants, and one included 35 participants.

The most common research aims of the studies included in this review fo-
cused on investigating the educational experiences of young people with
ASD, with eight of the studies including this focus. Of these eight studies,
two also included research into the young people’s social experiences. Four
of the studies focused solely on the social experiences of young people with
ASD. Three of the studies researched experiences of transition to secondary
school of young people with ASD. Two of the studies investigated the young
people’s views on their diagnosis, one of which also investigated their social
experiences. Two of the studies investigated the impact of social skills group
training, and one investigated their views on causes of anxiety and helpful
strategies for managing it.

In terms of research design, 16 were a case study or studies, one included

both a survey and case studies, one had a quasi-experimental design and two
had pre-experimental designs.

Methods used to elicit the views of participants with ASD, and quality of
responses elicited
Of the 20 studies, 14 used semi-structured interviews (SSIs) to gather the
views of those participants with ASD. In many of the studies which used
SSIs it was unclear how many of the participants the reported quotations
were from (Poon et al., 2014; Olsson et al., 2016; Dann, 2011; McLaughlin
& Rafferty, 2014; Wicks, 2014; Humphrey & Lewis, 2008). These studies all
included participants who were 12 years old or younger, with the exception

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of Wicks (2014), whose participants’ ages are not reported, but are said to at-
tend special provision, so are perhaps more likely to be significantly affected
by their ASD. Furthermore, Kirby (2004) found that the youngest partici-
pant (who was nine years old) struggled to reflect on their social experiences
and give detailed answers regarding them in an SSI. Of those studies where
we can be reasonably confident that all participants were able to give detailed,
reflective answers in the SSIs, one (McKeigue, 2009) involved children with
high academic ability, and in the other (Rogan, 2011) participants were rela-
tively older (15 to 17 years old), and attended a mainstream school.

In at least three of the studies using SSIs, participants, or their parents, had
some choice in where the interview was conducted (Kunz, 2009; Beteta, 2009;
McKeigue, 2009). These three studies used participants with different levels
of ability. Beteta (2009) found that participants who chose to have their in-
terviews in public places, such as a restaurant, were distracted by their sur-
roundings. McKeigue (2009) did not report this, despite undertaking some
interviews in a café. McKeigue’s (2009) interviews, however, only lasted 10
to 20 minutes, whereas Betata’s (2009) lasted 25 to 90 minutes. Kunz (2009)
reported that at least some of the participants appeared ‘aloof’ and ‘nervous’;
however, this study did not report where these particular participants were
interviewed.

Of the 14 studies which used SSIs, three used visual resources during the
interview (Wicks, 2014; Olsson et al., 2016; Dann, 2011). In all of these
studies, at least some of the participants seemed to give detailed answers.
Two of the studies using SSIs included additional measures. Calder et al.
(2013) also used a Friendship Qualities Scale (FQS; Bukowski et al., 1994).
All participants completed this, but their engagement while completing it is
not reported. Humphrey and Lewis (2008), in addition to conducting SSIs,
asked participants to complete diaries, and gave them a choice of recording
method. Of their 20 participants, nine completed the diaries for at least two
weeks, six used pen and paper and three chose oral recording, and no partic-
ipants chose electronic recording. One participant chose to draw a picture,
which was added to the findings.

Cordier et al. (2016) asked their participants to wear an iPod Touch for seven
days, and complete a short survey when signalled to do so, several times a
day. The children (aged eight to 12 years) were reported to be able to un-
derstand the survey, responded 56.8% of the time, and stated that it did not
interfere with their everyday lives.

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Weiss et al. (2013) also used surveys with their participants, but administered
these on a one-to-one basis with the researcher. All the children seemed to
complete the surveys used, but (similarly to participants in Calder et al.’s 2013
study) their motivation and engagement with the measure are unclear.

Hill (2014) asked participants (six secondary-aged pupils with ASD) to take
photos of places in school which were important to them, and conducted an
interview in which participants were asked to explain their choice of photos.
Participants reportedly said having the photos in front of them enabled them
to give more detailed answers.

Two of the studies included in this review used focus groups to gain the par-
ticipants’ views (Tobias, 2009; Charles, 2012). In both studies, groups were
asked to imagine alternative realities for themselves, with Charles’s (2012)
and Tobias’s (2009) participants being asked to imagine their ‘Ideal Self’
(Moran, 2001), and ‘successful’, ‘unsuccessful’ and ‘with ASD’, respectively.
Participants’ reported answers seem to be detailed and considered; however,
it is again unclear whether all members of the group were able to express their
opinions through this method.

Discussion
In answer to the first research question, regarding the types of data-gathering
methods used with individuals with ASD, it seems that SSIs are common
practice. When considering the second research question, of how effective
these data-gathering methods are, there seems to be some evidence that SSIs
generally work better for older (Rogan, 2011) or more able (McKeigue, 2009)
children. It may be that as individuals with ASD get older, they learn from
others, or specific interventions designed to teach them these skills, and so are
able to negotiate these communication challenges more effectively. Children
of higher academic ability may be able to learn these skills more quickly, or
these children may have had less difficulty in this area from the start. Chang
et al.’s (2012) research with children with autism aged six to 16 years supports
this, for example, with their finding of a positive correlation between their
full-scale intelligence quotients and their social skills (as measured by the
Adaptive Behavior Assessment System-II).

Of the studies which used SSIs, some allowed the participants to decide
where the interview was held. One of the studies found that participants were
distracted when interviews were held in a public place (Beteta, 2009), whereas
McKeigue (2009) did not report this. McKeigue’s (2009) interviews, however,

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 15

were considerably shorter. It may be that, particularly for longer interviews,
authors need to consider the specific needs of the participants who will be
involved, and offer a limited choice of locations for the interview, all of which
they feel will be conducive to the participants’ concentration. Researchers
could also offer to make changes to the environment, for example, using dif-
ferent levels of lighting, to help the participant feel more comfortable. This
seems particularly important when participants include those with ASD,
particularly as the DSM-5 criteria for ASD diagnosis includes ‘Hyper- or
hyporeactivity to sensory input or unusual interests in sensory aspects of the
environment’ (APA, 2013).

Visual supports, such as versions of Talking Mats (Murphy, 1998), which

Dann (2011) and Wicks (2014) used, are commonly advocated for use with
children with autism (for example, Brill, 2011). All three of the studies in-
cluded in this review which used visual resources alongside the SSI reported
at least some detailed participant answers (Wicks, 2014; Olsson et al., 2016;
Dann, 2011). Use of visuals which reduce the communication or memory
demands on the participants may therefore be beneficial when interviewing
children or young people with ASD.

Children and young people with ASD may also be better able to access in-
terviews where researchers adapt the wording of abstract questions, and use
visual resources, to make them more concrete. Charles (2012), for example,
made the abstract concept of what the participants’ hopes were for their
transfer to secondary school more concrete by asking them to think about
their ‘Ideal Self’ (Moran, 2001). Furthermore, Hill (2014) asked participants
to take photos of places in their school which were important to them, and
later used these in an interview where participants explained why this was the
case. Participants in this study reported that having the photos in the inter-
view helped them give more detailed answers. Similarly, Tobias (2009) asked a
focus group of pupils to draw and then describe imaginary students who were
‘successful’, ‘unsuccessful’ and ‘with ASD’, thereby allowing participants to
create their own visual supports to help them express themselves. It may be,
therefore, that with a combination of visual supports, and wording questions
to make abstract concepts seem more concrete, children and young people
with ASD can better access these types of questions.

Two of the studies reported using focus groups (Tobias, 2009; Charles, 2012).
Charles (2012) reported that the participants began spontaneously discuss-
ing possible solutions for their concerns in the focus group, and that even

16 British Journal of Special Education  Volume 0  Number 0  2020 © 2020 NASEN

participants with less confidence were able to participate. It may be that be-
cause this situation is more naturalistic for school-aged participants, some felt
less anxious and so more able to contribute. This suggests that focus groups
should not be ruled out when considering which data-gathering methods to
use with pupils with ASD, and more research into the effectiveness of this
method could be beneficial.

The lack of reflection on data-gathering methods by the authors of the stud-

ies included in this review limits, to some extent, the conclusions which can
be drawn. In many studies, for example, it is not possible to tell whether all
participants were able to give a detailed opinion. In order to allow for more
confident recommendations to be made, there will need to be more reflec-
tion from researchers on the suitability of their data-gathering methods for
participants with autism. Ideally, there should be research that specifically
examines the quality of information gathered from school-aged participants
with ASD using different types of data-gathering methods.

While all of the studies included in this review were rated as medium or high
quality, certain problems may have affected the confidence which can be had
in their results. For example, the studies commonly did not meet the criterion
of evidence of ‘researcher–participant negotiation’. Had this been met, for
example, by talking to participants about their preferred method for com-
municating their views, they may have discovered adjustments which would
have made the data-gathering methods more accessible. Furthermore, those
studies which were at the low end of the medium quality range tended to be
less likely to receive full marks for the criterion of ‘clear sampling rationale’.
McLaughlin and Rafferty (2014), for example, do not report how their oppor-
tunity sample of six young people in Years 10 to 13 (and so likely to be aged
14 to 19) from a mainstream secondary school were chosen, or any other par-
ticipant characteristics (such as severity of ASD) that may have impacted on
their ability to access the SSI. It seems likely that the type of data-gathering
method will need to be tailored to each participant’s particular needs, and
so this limits the confidence with which conclusions can be drawn from this
research. It may be that participants with ASD, on average, require a greater
degree of differentiation in data-gathering methods than is suggested from
these studies, as those likely to participate in an opportunity sample could be
those with communication skills which are more easily accommodated.

While a variety of data collection methods were included in this review,

some are not. This could restrict how fully we can answer the question of

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 17

which data-gathering methods are most useful for participants with ASD.
Furthermore, some of studies that were excluded from this review, because
of a low rating for ‘methodological appropriateness’, included different da-
ta-gathering methods, such as personal communication (Carlson, 2007) and
observation (Graffam, 2005). This could highlight a need for researchers
using these methods to describe their study in replicable detail. Future re-
search could also look to explore those methods used in only a few of the
studies included in this review, such as surveys, diaries and the use of tech-
nology, and aim to gather participants’ views on more than one occasion, or
over a longer period.

It should also be considered that the authors of this review were only able
to include 20 studies which gathered the views of participants with ASD,
which indicates a need for more research into ASD to include children and
young people with ASD as participants. Furthermore, the majority of studies
(16 out of 20) included in this review were case studies. This may be linked
with the fact that the inclusion of participants with ASD is still considered
rare, and so case studies, which typically gather detailed information on
few participants and allow more easily for a tailored approach to each par-
ticipant, may be a useful method for researchers wanting to exploring this
emerging area. Nevertheless, future research may wish to consider adding to
this evidence base research conducted on a larger scale, to increase the repre-
sentativeness of the information gathered and allow for quantitative analyses.

The findings of this review complement the findings of Fayette and Bond
(2018). Their review has a similar focus to this study. They investigate the
qualitative methods that researchers have used to elicit the views of young
people with ASD, and the extent to which these methods were evaluated. Both
reviews found a lack of detail in many studies when reporting the character-
istics of the participants, indicating that it may be difficult to draw conclu-
sions that enable researchers to match data-gathering methods to participant
characteristics. Both studies also indicated the potential value of including
visual supports in SSIs. Differences in the reviews, including the difference in
the number of studies found (with eight fewer studies in Fayette and Bond’s
review) can be attributed to a combination of factors including slight differ-
ences in focus (for example, the inclusion here of quantitative studies) and
differences in search methods (for example, three of the databases searched),
as well as the decision to extend the age range of participants included (to
include children younger than 11), and to include theses. The focus of Fayette
and Bond’s analysis of the studies also differs, which may further explain

18 British Journal of Special Education  Volume 0  Number 0  2020 © 2020 NASEN

some of the differences in findings. Fayette and Bond, for example, in con-
trast to this review, consider whether researchers have consulted relevant pro-
fessionals when developing their data-gathering method, whereas this review,
in contrast to Fayette and Bond’s, considers the abstractness of the questions
presented at interview. Furthermore, this review includes studies that use a
wider range of research methodology with participants with ASD, including
focus groups, frequent electronic survey completion over a number of days,
self-rating questionnaires, and participants being asked to take photos. This
all suggests, therefore, that this review is a useful addition to the knowledge
base in this field.

The studies found in this review offer some evidence supporting the use of
focus groups with participants with ASD, as well as SSIs conducted in a suit-
able environment, with visual resources, and adaptations to more abstract
questions. Much more research is needed, however, in order to allow data-
gathering methods to be more confidently matched with participant charac-
teristics. Above all, future research could do much more to ensure that the
views of this group of children and young people are elicited and listened to.

Acknowledgement
This project was funded through England’s Department for Education (DfE)
National College for Teaching and Learning (NCTL) ITEP award 2012–2015.

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Address for correspondence

Beverley Tyrrell
Room A1.18
Ellen Wilkinson Building
University of Manchester
Manchester Institute of Education
Oxford Road
Manchester M13 9PL
UK
Email: beverley.penny@gmail.com

Article submitted: June 2018

Accepted for publication: August 2018

© 2020 NASEN British Journal of Special Education  Volume 0  Number 0  2020 23