Enhanced recognition of neurodivergence as a natural variation in human minds that is valuable and in need of support is steering a significant shift in science and research towards a non-pathologizing approach to neurodevelopmental differences, such as autism and attention deficit hyperactivity disorder (ADHD) (Chapman R. et al, 2021).
The estimated prevalence of autism is 1-2% globally (Lai MC. et al, 2014; Roman-Urrestarazu A. et al, 2021), however, diagnosis is often delayed or inaccurate due to complicated referral routes and long assessment waitlists (NHSE, 2023). Yet, research studies on autism have largely overlooked the lived experience of autistic individuals, particularly children and young people, and the insights of autistic researchers.
Co-production throughout the research process and participatory research methods are key parts of the effort to ensure greater focus on the needs and priorities of the autistic community. Conventional qualitative methods, like focus groups or interviews, may not be the most suitable for the range of communication styles and preferences within this population.
Thus, Lewis and colleagues in the current paper sought to explore the advantages and difficulties of employing creative qualitative methods with neurodivergent children with varied communication profiles to increase accessibility and inclusivity in psychological research (Lewis K. et al, 2023).
The way we study autism is changing with the neurodiversity framework that disputes the traditional pathologizing and deficit-centred view, but we are still greatly missing perspectives of neurodivergent young people, which requires innovative and creative research methods to ensure inclusivity.
Methods
The authors intended to achieve their aim by outlining and reflecting on their participatory approach of applying creative, individualised qualitative methods with neurodivergent children in an ongoing longitudinal study about transitioning from primary to secondary school in England. Thus, this is a methodological paper, appropriately not including any formal analyses.
The participants included 13 neurodivergent children aged 11 years, diagnosed or awaiting assessment for autism, of which all were white and 77% were boys.
Results
Pre-study period (consent and familiarisation)
The authors collected written parental/guardian consent and informed assent from participating children using an easy-to-read plan of the study with text and images, including names and images of the research team. Participants circled either a thumbs up or thumbs down image to provide their assent, which researchers continuously reviewed.
Before the start of the study, the research team gathered information regarding interests, needs, preferences, communication styles, sources of stress or individual challenges of each participating child in two ways: preliminary calls with parents/carers followed by a familiarisation meeting between researchers and participants to share information about each other through a creative exercise of drawing, writing, and chatting. This informed the adjustment of research protocols to be accessible and engaging to each participant and helped establish trust and a positive relationship.
Data collection period
The pre-study period was used to develop individualised research protocols encompassing a selection of creative data collection methods that aligned with the participant’s interests and communication preferences. The authors described these methods, broadly organised into three categories, and reported their perceived value and effectiveness drawing on the first wave of data collection in the longitudinal study.
1. VISUAL METHODS
Draw-Write-Tell
Participants were asked to draw or write their responses to a combination of prompts, followed by a side-by-side discussion with the researcher.
- Advantages:
- This approach helped children to attribute meaning and reduced potential misinterpretation by the researcher.
- It was particularly engaging for children who liked creative activities and eased the pressure to keep eye contact for those who felt overwhelmed by it.
- Disadvantages:
- It was less appropriate for those facing challenges with fine motor skills, and those preferring more directed activities over open-ended tasks.
Photo-elicitation
Participants were asked to take photographs or were given images, which either served as prompts during an interview or were used to create a collage for specific discussion topics.
Advantages: This child-led and collaborative approach facilitated conversations regarding abstract concepts (e.g., future school transitions) by connecting them to the relevant environment (e.g., school). It eased the expectation of thinking on the spot for those who may find this challenging.
Disadvantages: It appeared less suitable for those who struggled with the activity’s unstructured nature, which limited the depth of the conversation where participants would focus on factual descriptions of the images.
2. EMBODIED METHODS
Walk-and-Talk
Participants were asked to guide the researcher around their school, discussing or pointing out elements of the environment that were important to them, with the possibility of photographing significant places.
- Advantages:
- This approach provided agency to the participating children to guide the conversation.
- It was thought appropriate for those who find moving around helpful and particularly suitable for those with co-occurring ADHD.
- Disadvantages:
- The lack of goal-directed tasks and structure limited the depth and breadth of discussions, so participants were inclined to show either too little or everything in the school not accounting for personal significance.
- Challenges included minimising background noise during recordings, school restrictions on areas for walking or photographing and respecting the other pupils’ privacy.
3. DISCURSIVE METHODS
Card sort
Participants received a collection of cards with pictures and brief explanations showing school experiences and rated them using up to five stars based on their preference, while also being encouraged to explain why they chose the rating.
- Advantages:
- The approach proved to be engaging for all participants and was flexible enough to effectively engage those who struggled with maintaining attention.
- The cards offered a useful structure to the child-led discussions.
- Disadvantages:
- In some cases, participants had varying understandings of the cards’ content, which was easily solved by clarifying with participants after the activity.
Statement sort
Participants received a set of statements regarding their mainstream school and transitioning to secondary school experiences and responded to each with ‘yes’, ‘no’, or ‘not sure’.
- Advantages:
- This approach enabled a structured and child-led discussion.
- Disadvantages:
- Limitations included the varying understandings of the statements between children and the misuse/overuse of the ‘not sure’ answer for complex statements.
- Following up with an interview provided an opportunity to clarify answers.
Semi-structured interview
Participants were asked to respond to a pre-determined set of interview questions, while also allowing for flexibility, concurrently or after the other research methods.
- Advantages:
- This approach enabled the researcher to clarify previous topics and discuss new relevant ones that had not been previously covered.
- It could be made more suitable for neurodivergent children by rephrasing, giving specific examples, or taking time to confirm understanding where needed.
- The flexibility of this method meant that researchers could be selective with their questions and prioritise depth of answers over less insightful responses to a wider range of questions, which helped to manage the declining attention of participants at the end of the data collection session.
- Disadvantages:
- This approach can be less appropriate for those who find one-to-one discussions challenging.
This methodological paper offers compelling insights into innovative participatory approaches for inclusive qualitative research with neurodivergent children, including a thoughtful pre-study familiarisation stage and individualised strength- and interest-based creative data collection methods.
Conclusions
The paper concludes that no ‘one-size-fits-all’ when it comes to conducting research with neurodivergent children, who vary greatly in their needs, strengths, and interests.
Compared to traditional qualitative methods, the authors demonstrate many potential benefits in opting for creative and participatory methods that are individualised, flexible, and sensitive to the profile of the neurodivergent child. These approaches offer a more inclusive and accessible way to engage this population in research, democratise the process, and centre the child’s voice, thereby ensuring richer data and increased rigour of qualitative research.
The substantial value of two-way familiarisation between child and researcher and spending time to build trust and rapport before data collection, as well as reflecting on researcher positionality during the research process were also emphasised.
Using individualised, creative methods for research with neurodivergent children has the potential to facilitate inclusivity, richer data, and a more rigorous approach compared to traditional qualitative methods.
Strengths and limitations
There are several strengths of the study, including successfully engaging participants throughout the research process and an outstanding attempt to centre the voices of neurodivergent children. The authors used a combination of visual, embodied, and discursive methods individualised to each participant’s profile. Importantly, both advantages and limitations of each method were discussed.
The breadth and depth of the qualitative data collected via the study’s methods could not be evaluated as the paper focused solely on methodology. The effectiveness and acceptability of the methods were not empirically tested, rather the study described the procedure and perceived value of the methods.
The authors acknowledged the under-representation of non-male genders, and non-white ethnic groups as a limitation. An additional limitation was the lack of autistic individuals with co-occurring intellectual disability, indicating a potential selection bias (Russell G. et al, 2019).
Lewis and colleagues reported the inability to conduct all data collection in schools as a limitation, as a few interviews were conducted in participants’ homes. Conducting the research in a different environment to the one of the study’s interest could hinder recollection and interpretation of school experiences, and cause infringement of personal boundaries within the child’s home. Yet, the authors noted some logistical difficulties in conducting research in schools, including noise, having to use unfamiliar spaces, and busy school timetables that restrict the duration and frequency of sessions. Additionally, they reflected on the difficulty in ensuring fully informed assent and agency when conducting research with children, especially when it is carried out in schools where children tend to conform to requests from adults.
Importantly, the choice of research methods was limited to what had been considered by researchers and had received ethical approval, thus it lacked involvement from neurodivergent young people in the study design stage.
Lewis et al. 2023 effectively engaged neurodivergent children and centred their voices throughout the research, but its findings are not intended to apply to the wider neurodivergent population.
Implications
The implications of this methodological paper are relevant for future research involving neurodivergent children and could also inspire ways of adapting clinical practice for this population. It explored much-needed alternatives to traditional qualitative methods and reported their potential to disrupt the usual dynamic in the research space and prioritise the viewpoints of neurodivergent children, thereby showing promise of richer data and higher rigour. It appears to be a time-consuming approach that may not always be feasible depending on time and financial resources. However, aiming for better quality and inclusive research with neurodivergent children is crucial towards a greater understanding of their experiences, unmet needs, and ways to make support more suitable and effective.
Further exploring the acceptability and effectiveness of such participatory methods in comparison to traditional qualitative methods with a diverse group of neurodivergent children across different settings would be valuable towards ensuring meaningful representation of a wide range of neurodivergent perspectives. More efforts are needed to address the ongoing and persistent challenge of under-representation of non-male and non-white neurodivergent voices, as well as voices of those with co-occurring intellectual disability, in research.
The authors reported several important considerations for future research. Ensuring that research with neurodivergent children takes place in a physical setting where they feel at ease is crucial for studies aiming to embrace neurodiversity. Additionally, research could benefit from providing a high level of agency to participating children by obtaining informed assent and continuously observing the participants’ behaviour and engagement in the research (for e.g., participants can use visual tools to indicate changes in assent during the research process). Finally, future research could benefit from involving an advisory panel of neurodivergent young people before collecting any data to influence the choice and flexibility of research methods used in the studies, thus enhancing engagement and accessibility.
Co-producing research with young people with lived experience and involving them from the start is crucial for enhancing interest and accessibility in research involving neurodivergent youth.
Statement of interests
Tamara Pemovska does not have any affiliation with the authors of this study.
Links
Primary paper
Lewis K, Hamilton LG, and Vincent J (2023) Exploring the experiences of autistic pupils through creative research methods: Reflections on a participatory approach. Infant and Child Development 2023 e2467. https://doi.org/10.1002/icd.2467
Other references
Chapman R, Botha M (2023) Neurodivergence‐informed therapy. Developmental Medicine & Child Neurology 2023 65(3) 310-7. https://doi.org/10.1111/dmcn.15384
Lai MC, Lombardo MV, and Baron-Cohen S (2014) Autism. The Lancet 2014 383(9920) 896–910. https://doi.org/10.1016/S0140-6736(13)61539-1
Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, and Baron-Cohen S (2021). Association of race/ethnicity and social disadvantage with autism prevalence in 7 million school children in England. JAMA Pediatrics 2021 175(6) e210054. https://doi.org/10.1001/jamapediatrics.2021.0054
NHSE (2023) A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards. Retrieved from https://www.england.nhs.uk/long-read/a-national-framework-to-deliver-improved-outcomes-in-all-age-autism-assessment-pathways-guidance-for-integrated-care-boards/
Russell G, Mandy W, Elliott D, White R, Pittwood T, and Ford T (2019) Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism 2019 10(1). https://doi.org/10.1186/S13229-019-0260-X
Photo credits
- Photo by Kelly Sikkema on Unsplash
- Photo by Markus Winkler on Unsplash
- Photo by Harry Grout on Unsplash
- Photo by Aaron Burden on Unsplash
- Photo by Markus Winkler on Unsplash
- Photo by Hannah Busing on Unsplash
