Draft paper - subsequently published as:
Lewis, A. (2009) Methodological issues in exploring the ideas of children with
autism concerning self and spirituality Religion, Disability and Health 13 64-76
ISSN 1522-8967 print/ 1522-9122 online; DOI 10.1080/ 15228960802581446
Methodological issues
in exploring the ideas of children with autism
concerning self and spirituality
Ann Lewis, University of Birmingham *
1. Introduction
To consider hearing directly from children with autism about their views
concerning spirituality (see footnote concerning use of terms) is bold, possibly
foolhardy, on,at least, three counts.
1.1 They are children:
A child’s powers of observation are less reliable than an adult’s .. prone
to live in a make believe world … they are also very egocentric… very
suggestible … often have little notion of the duty to speak the truth..
Finally children sometimes behave in a way evil beyond their years.
(Heydon [an English lawyer] 1984: 84)
With so many mindbytes to be downloaded, so many mental codons to
be replicated, it is no wonder that child brains are gullible, open to
almost any suggestion, vulnerable to subversion.
(Dawkins, cited in Mills and Keil 2005)
1.2 They have autism:
By definition, this brings concomitant communication difficulties, although it is
important to remember the heterogeinity of children with autism. DSM-IV-TR
(APA 2000) specifies three diagnostic categories, each with four components,
that are used to make a diagnosis of autistic disorder. These diagnostic
categories include impairments in social interaction, communication, and
particular (often very rigid) patterns of behaviour.
and
1.3 the focus is on spirituality.
1
The difficulties in researching this area are widely recognised; for example:
People are often extremely shy of talking about spirituality in public for
fear that they will be thought stupid, or even mentally disturbed .. The
disadvantage of encouraging children to talk in religious terms was that
it tended to trigger off impersonal “learned” responses rather than
reference to the child’s personal experiences
(Hay with Nye 2006: 88)
2. Why is it important to hear directly from children with autism about
their views concerning spirituality?
First, there is increasing recognition of children’s right to express their views
(Alderson and Morrow 2004; Lewis and Lindsay 2000). The 1989 United
Nations Convention on the Rights of the Child (Article 12) emphasises the
right of all children to have a voice when decisions are being made about their
provision. That provision should (although often does not do so) include
meeting spiritual needs/wants.
Second, there is considerable evidence of the links between health, and
spirituality or faith (Hill and Pargament 2003; Plante and Sherman 2001).
Most of this work has concerned adults but in two studies involving children
and young people living with serious chronic illnesses, they were also found to
derive important coping strategies from a religious or spiritual framework of
beliefs (Culliford 2002; Pendleton et al 2002). It would be reasonable to
hypothesise that children with autism (and other disabilities) also gain similar
support from such beliefs.
Third, accounts of faith-based groups in relation to children with special needs
or disabilities abound with examples of misunderstandings, prejudice and
intolerance towards those children (Turner et al 2004; Vogel et al 2006). For
example, Vogel et al (2006) cite reports of children/young people with autism
not being given communion on the assumption that such children did not
understand the meaning behind this practice. How do adults know that these
children do not understand unless they ask the children? However there are
also impressive accounts of understanding and inclusion in faith communities
(e.g. Gregory 1989) and valuable guidance (Swinton 2001; Swinton and
Powrie 2004), some of which does make reference to hearing (usually
informally) disabled children’s views. Speraw’s review (2006) reflects these
positions and concludes:
“Future research must extend to developing insights into the inner life
of disabled persons, especially children, as their lived experience has
not been explored” (2006: 229).
2
Fourth, children with autism may, by definition, exhibit characteristics which
have distinctive and autism-specific features which impact on their religious or
spiritual experiences and understanding. Baron-Cohen (2008) discusses “the
new idea that the autistic cognitive style searches for truth [author’s italics]
(defined as precise, reliable, consistent, or lawful patterns or structure in data)
that can lead people with autism to perceive patterns with remarkable
accuracy but at the same time renders them challenged ..by information that
is ambiguous” (2008: 65). In the present context this predisposition could be
seen as likely to support strong religious faith [or fervent atheism] in people
with autism. One interpretation of this last point is that people with ASD will
be drawn differentially to varous religiosn or sects with, arguably, the more
obvioulsy rulle-bound (e.g. Catholicism? Judaism?) attarcting people with
ASD more strongly than would, for example, Liberal Quakers. What people
with ASD would presumably find difficult or untenable is the agnostic position
or the wavering fuzziness of many (perhaps most) people’s religious quests.
We lack reliable research evidence about such nuanced realtionships
between children in intra-disablity groups and their religious beliefs.
3. Challenges
Generic research on children and spirituality has not explicitly included
children with special needs/disabilities so it is not clear whether they have
been omitted, given the likely methodological difficulties in accessing their
views, or subsumed within larger groups (Hay with Nye 2006; Francis 2001;
Kimes-Myers 2002).
If we accept the importance of hearing directly from children and young
people with autism about their views concerning spirituality then a number of
specific methodological challenges arise including the following:
3.1 Gatekeepers
Children with autism, like other children with special needs or disabilities, may
through well-meaning protectiveness, not be included when children’s views
are sought concerning spirituality. For example, when seeking the views of
children, in mainstream schools, with epilepsy about their condition (Lewis,
Parsons and Smith, 2007) one headteacher anticipated that the child, a 7 year
old with epilepsy, would not be able to say anything about her epilepsy
because the child did not understand the condition. This was understandable
in that it is probable that nobody at the school had talked with the child about
epilepsy, given the widely reported culture of secrecy around the condition
(Baker et al. 2005; Lewis, Parsons and Smith 2007). However in the event,
this child was thoughtful and articulate; for example, trying to explain her
experience of a seizure: “(Like) it is raining in my head. Like when it is
thundering outside”. The dearth of research evidence about spirituality in
relation to the views of children with autism may point to similar cautiousness.
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This caution may be compounded in some faiths and cultures by views of
these children as particularly ‘spiritual’ or on a higher spiritual plane than
‘neuro-normals’; the presumed heightened spirituality of children with autism
leading to a perception that it would be inappropriate or irreligious to probe
their spirituality (Shaked and Bilu 2006; see symposium papers).
3.2 Ethical protocols
There is increasing emphasis on the importance of following ethical protocols
(e.g. British Psychological Society 1996; British Educational Research
Association 2004) in research, particularly when that research involves
children or other ‘vulnerable’ participants. An element of such protocols is
usually ensuring, or, at a minimum, checking, that participants understand
matters such as confidentiality, anonymity, rights to withdraw, and the
importance of recurrent fully informed consent to participate. It is unclear
whether children really understand these protocols and when, rarely, they are
tested explicitly younger children (chronological age <10) have been found
not to understand/believe the ethical assurances given by the researchers
(Hurley and Underwood 2002). Children with autism may find ethical
protocols particularly problematic as they relate closely to personal
relationships and associated expectations or conventions.
3.3 Ground rules for the interaction
It is well recognised that, by definition, establishing a joint focus or arriving at
a shared agenda is problematic when engaging with children with autism.
Shaked and Bilu, citing Scarry 1985, describe this succinctly as a “breakdown
in the taken-for-granted experience of reality as shared” (2006: 2). As a
result, particular methods have been developed to try to circumvent such
difficulties (see below). These methods also try to address associated
difficulties such as a communication/ language mismatch for these children,
i.e. they know more than they can say or, conversely, say more than they
understand. Rocha et al (2007) report a successful parent-implemented
intervention programme which targeted getting and sustaining joint attention
with children with autism. Researchers working with such children might
similarly need to explicitly add joint attention-getting skills to their research
repertoire.
These children’s emotional support needs may also be reflected in a need for
structure and predictability. This makes visual stimuli, often used elsewhere
in research in hearing children’s views, possibly problematic as particular
stimuli may prompt rigid responses, as found in the use of cue cards with
some young children with autism (Lewis et al 2005; Lewis et al in press). Cue
cards, six cards based on extensive piloting and reflecting visual prompts for
key narrative elements, were otherwise highly effective in a diverse group of
disabled children and young people from primary school age children with
learning disabilities to young offenders.
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4. General guidance in accessing children’s views (drawing on Lewis
2004, Lewis and Porter 2007; Lewis, Parsons and Robertson 2007)
The importance of modifying interview techniques when communicating with
children with disabilities or special needs has been well-documented (Lewis
and Lindsay 2000; Lewis and Porter 2007). To ilustarte: Cederborg et al
(2007) working within an applied cognitive psychology paradigm in relation to
suspected child abuse, concluded that when children with severe learning
difficulties (‘intellectual disabilities’) were given a second chance to provide
information then they could give new and supplementary information. These
researchers make the proviso that information from such repeated interviews
may not be reliable unless the interviewers have received specific training in
talking with these kinds of children and young people in this context.
4.1 Permitting/encouraging ‘don’t know’ responses and requests for
clarification
Understanding of complex abstract concepts, such as those associated with
religion, may prompt a high proportion of non responses (see McKenna’s
work (1998) on children’s views about understanding of Christian symbols
involving primary age children with learning difficulties.) Ceci and Bruck
(1995, 1993) provide powerful illustrations from courtroom contexts of
distortion arising from the interviewer’s apparent refusal to believe that a child
had forgotten a detail, or had a legitimate reason for not wanting to repeat an
earlier remark. While there is less at stake in a research context, their
warning about distortion arising from, in effect, disallowing ‘don’t know’
responses or silence, is applicable.
There is evidence that encouraging children to explicitly say that they do not
know the ‘answer’ or do not understand a question is valuable. Saywitz and
her co-workers (Saywitz 1995) interviewed 6-8 year olds using a range of
questions with linguistic formats which varied from very easy to very complex.
In summary, this study demonstrated that these young children could be
taught to identify non comprehension and to ask for re-phrasing. Both
strategies led to improvements in the accuracy of the answers then given.
The need for such training is suggested in a more recent study, involving
nearly 400 2-5 year olds, which found that children rarely answered ‘I don't
know’ even when they had been encouraged to admit to not knowing (Fritzley
and Lee 2003).
Colleagues working in the autism field suggested three possible
repercussions in relation to children with autism. First, these children and
young people may be happy to respond that they don’t know. Indeed that
response may feel safer for them than trying to answer a question to which
they do not have a response. So for those children it will be very important
that they develop skills through which they are able to request the person
asking the question to clarify what they mean. Second, children with autism,
5
may give over-full responses. So the interviewer may be answered with a
lengthy monologue addressing every aspect of the question. Third, linking
with a lack of joint focus, above, the child may neither say ‘don’t know’ nor
answer the question but instead talk at length to their own agenda.
4.2 Stressing not knowing events/views of child to counter the child’s
assumption that the adult knows the answer
Children, more readily than adults, will assume that the adult questioner
knows more than they do. This is especially so if the adult has credibility with
the child so, in this context, building rapport may be counter-productive in that
it may lead to a greater proneness to suggestibility, possibly less true of
children with autism than it is of other children. A possible way to deal with
this is to use a ‘ventriloquist’ interviewer such as a soft toy which ‘asks the
questions’ as children may more readily perceive the soft toy to be asking a
genuine question whereas the sincerity of the adult questioner may be
perceived as false.
Current work concerning attempts to teach people with autism a ‘theory of
mind’ and facial recognition, through using virtual worlds as well as objects
and toys imbued with personal characteristics, is relevant here (Parsons et al
2004). Using a toy can motivate the child to want to answer, particularly if it is
a ‘character’ in which they are interested, such as Thomas the Tank Engine,
Teletubbies or a dinosaur. It may also be easier for the child than trying to
relate directly to a person because potentially confusing contextual factors are
reduced.
4.3 Use of statements compared with questions
A range of work with children has shown the value of making statements that
prompt a response, rather than a direct question, to elicit views. The
tendency for adults, particularly teachers, to use question-answer-feedback
routines has been described by some writers as reflecting power relationships
(Edwards and Mercer 1987). Through the use of questions, the adult keeps
the ‘upper hand’. Thus in the research context, the use of statements rather
than questions also reflects an implied power relationship.
Preece (2002) notes, in relation to the possible content of
statements/questions directed to children with autism, those children’s likely
difficulties in anticipating the future, showing personal insight and accepting
change. These characteristics will influence both explicit and intuitive
decisions about the phrasing of statements.
4.4 Use of repeat questions
Repeating a question has been found to lead to fewer correct but not more
incorrect answers in mainstream 6, 8 and 10 year olds; that is, when the
question was repeated they either did not answer or they said ‘don’t know’
(Moston 1987). There is a possible analogy here with classroom talk in which
children are tuned into the idea that a repeat question means that the first
6
response was incorrect. Note that these dangers of repeating a question
applied to closed, but not to open, questions (Bull 1995).
As Beresford (1997) notes, there can be value in repeating the focus of an
open question. She reports a study about children’s experience of pain in
which children were asked about migraine headaches. The children were
asked (individually) how they would describe the headache to a parent, a
friend and a doctor. The answers varied depending on the role of the listener
with a concise and unemotional account being given to a parent, an emotive
account being given to a friend and a full account being given to a doctor.
This illustrates the impact of the perceived context on the nature of the
information the child chooses to voice but it would be useful to know how the
reported variability in imagined accounts would have matched actual accounts
in the real contexts.
There is some evidence that closed questions may be more effective than
open questions in engaging with children with autism. Guldberg (personal
communication) found that children with autism showed more responses and
initiated communication more often in structured, compared with unstructured,
situations in the classroom. Unstructured situations led to less
communication. This may explain why the PECS (Picture Exchange
Communication System) is very useful for such children; that is, it not only
provides a structure to the communication but also, through that structure,
explicitly teaches children about reciprocity.
4.5 Use of successive prompts
In general, young children tend to be accurate but incomplete in their
accounts (Saywitz and Snyder 1993). There is a well-documented tendency
to confabulation, i.e. filling in gaps in memory with invention, which is more
likely for areas about which memory is unsure. Work on the forensic
interviewing of children (Ceci and Bruck 1995) illustrates the ways in which
successive prompting tends to lead to inaccurate responses. With repeated
questioning children fill in imaginary details which they then come to believe
with great conviction. Interviewers of children with autism may inadvertently
reinforce this because such children tend to have a difficulty with personal
memory of events (Jordan and Powell 1995).
In line with this, confabulation seems to be more likely in relation to
descriptions of people or things rather than events (Spencer and Flin 1990).
A useful caution is given by Beresford (1997) that children’s apparent
weaknesses may more fairly be seen as reflecting their different priorities.
For example, she found that when children were interviewed about the birth of
a sibling, they did not recall details to the same degree as did the mother. So,
Beresford suggests, this was not a reflection of memory loss but a difference
in the significance of the event for the children compared with the mother.
4.6 Right to silence
7
Finally, we need to acknowledge that children may not wish to express their
views:
We need to recognise the choice of a child to be silent but also
recognise that silence gives a message of its own that we should hear.
Lewis and Porter 2007: 230
5. Conclusion
Recognising the methodological points reviewed briefly here, some feasible
approaches when exploring with children with autism their views concerning
spirituality are: self generated approaches, such as digital cameras (Germain,
2004; Lewis et al 2005; Beresford et al 2004) and ‘ideal self’ drawings (Moran
2006). The search, as Richard Rorty noted in discussing Descartes, is for
wisdom not certainty.
I concur with Hay and Nye (2006:85) that “The most important preliminary
statement one needs to make is about integrity”.
“There are no universal solutions, nor a perfect methodology .. . there
is a need for transparency around the difficulties and a fuller sharing of
the methods used, including those which were not successful. This
calls for a willingness to be flexible in using more innovative
approaches and developing new skills, and to be thorough and
systematic in validating our analysis”
Lewis and Porter 2007: 230
extend/ beef up concl
Footnote
Use of terms
1. The term ‘spirituality’ is contentious and often ambiguous (sometimes used
interchangeably with ‘religion’/‘religiosity’/faith) but is used here to
mean:
“(an) awareness of the transcendent ('the beyond in our midst’), the
awareness of something beyond intellectual knowledge or normal
sensory experience .. thus concerned with: meaning and purpose in
life; interconnectedness and harmony with other people, planet Earth
and the Universe; and a right relationship with God/a power or force in
the Universe which transcends the present context of reality”.
(http://www.oxford.anglican.org/page/2316/ accessed 31/10/07).
8
2. This contrasts with the term ‘religion’:
“a shared framework of theistic beliefs and rituals that gives a social
context within which spirituality is expressed and nurtured, and the
meaning of life explored”
(http://www.oxford.anglican.org/page/2316/ accessed 31/10/07).
3. The word ‘autism’ is used to encompass the whole spectrum of autistic
spectrum disorders /conditions (i.e. including classic autism and Asperger’s)
(see Baron-Cohen 2008).
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Acknowledgment
With thanks to Karen Guldberg (School of Education, University of
Birmingham) for insightful discussions about the issues raised here.
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