Introduction & Aim
Neurodiversity refers to differences that exist between individual’s brains. People can be neurodiverse in more than one way. People with multiple-exceptional neurodiversity have high abilities and learning difficulties (Foley-Nicpon, et al., 2013). Variously called handicapped-gifted (Carolyn R. Yewchuk, 1989), gifted learning disabled (Brody & Mills, 1997), dual or multiple exceptional (Potential Plus UK, 2020) and twice-exceptional (Ronksley-Pavia, 2015) – 2e people have a double-neurodiversity identity. In some ways, they can identify with people who are gifted but they can also identify with people who are learning disabled. In fact, they experience a unique diversity that is multi-faceted, paradoxical, and challenging to recognise.
We all have strengths and weaknesses but the exceptionality in 2e or DME (Dual Multiple Exceptional) children is different.
“The term DME is used to describe children who have high learning potential and one or more special educational needs. It is not the same as having a spiky profile; children with a spiky profile have notable strengths contrasting against weaknesses in other areas, but do not have the exceptional talent or giftedness of a DME child.” (The Good Schools Guide, n.d.)
2e/DME neurodiversity is often hidden, misdiagnosed, overlooked, or even unheard-of (Foley-Nicpon et al., 2013). In a survey of American school psychologists, more than half (60%) had little or no familiarity with the concept of twice-exceptionality (Robertson, et al., 2011). If school psychologists, who are considered to be knowledgeable about neurodiversity, are not aware of twice-exceptionality, how can we expect other people to know about it? There also appears to be a lack of British research into understanding and awareness. This gap in the research led me to wonder, how can we increase awareness about twice-exceptionality in the UK and ultimately make supports for 2e/DME people more widely available? As a 2e/DME designer and researcher, how can I better understand the 2e/DME experience from more than my own point of view?
Aim: The aim of this collaborative project is to increase understanding about 2e/DME neurodiversity.
Why it is an Important Area of Research
Within the realms of neurodiversity, some children have the potential to learn at a faster rate and deeper level than their neuro-normal age-mates. According to Potential Plus UK (2020), an organization that supports children with high learning potential, between 5-10% of those children also have a special education need due to a learning difficulty (such as Autism or Specific Learning Disabilities). Consequently, 2e/DME individuals are a minority within a minority. And they are often invisible because their strengths can mask their difficulties, and their difficulties can mask their strengths (Brody & Mill, 1997). Bright kids develop coping strategies to hide their struggles.
One barrier to raising awareness about 2e/DME is the misconception that bright kids can’t have learning disabilities. In the early 1900’s, research into intelligence focussed on the idea that intelligence is a global construct. Researchers tried to develop intelligence tests that would “measure” intelligence in a single score. You’ve probably heard of intelligence tests (IQ), and a lot of people still believe this idea – that intelligence can be quantified as a single number, with 100 being average.
But in the 1980s, theories of multiple intelligences began to be developed. For example, Howard Gardner’s (2011) theory of multiple intelligences added new elements to how we think about intelligence by defining a range of abilities. And Sternberg’s (as cited in Blesch, 2012) triarchic model of intelligence described three attributes of intelligence: analytical, creative, and practical. These theories challenged the idea that intelligence can be summed up in a single score.
Yet the lack of awareness and understanding about dual exceptionality persists. And when people lack awareness about potential needs, those needs often go unmet, whether they are students in schools, or adults in the workplace.
Increasing my understanding of this subject and contributing to the British literature can potentially help support a later and larger aim of increased awareness about 2e/DME. Increasing understanding from the 2e/DME perspective is an important area of research because a greater understanding would mean parents could better advocate for their children, teachers could recognise 2e/DME students, adults could seek the supports they need in the workplace, and 2e/DME individuals could develop their potential, instead of juggling their coping strategies. It’s time to start breaking down the misconception that you can’t be both bright and have a SLD together. The lack of understanding is a problem because there’s a lack of resources and support for 2e/DME people. Without first gaining a better understanding, how can we then increase awareness and support?
Who Else Has Done Something Similar?
Researchers and designers have used a variety of approaches to develop our understanding about dyslexia (a SLD) and DME neurodiversity.
Co-designing learning strategies through Participatory Action Research
Maryanne Haines used Participatory Action Research (PAR) design in her thesis entitled “Opening the doors of possibility for gifted/high-ability children with learning difficulties: preliminary assessment strategies for primary school teachers” (Haines, 2017). She used PAR to co-design and develop strategies for teachers, with teachers to help 2e/DME students.
Investigating perceptions through disruption
Made By Dyslexia opened ‘the worlds first dyslexic sperm bank’ to raise awareness about dyslexia and some of the famous dyslexics who are generally considered of high intelligence or high achievers such as Albert Einstein. They also collected information about public perceptions and understanding about neurodiversity. Their film about this intervention won the 2018 D&AD Award Pencil (Made By Dyslexia, 2018).
Learning about leadership through interviews
The Scottish Network for Able Pupils conducts research on highly able students within Scotland and completed a report entitled “School Leadership for Highly Able Pupils” (n.d.) where they interviewed head teachers in Scottish schools covering a wide range of questions around highly-able students in the education system.
Communicating through design
Noah (15 years) from Coloured Fish Products designs t-shirts to raise awareness around Dyslexia and communicating his lived experiences (Coloured Fish Products, 2020).
Despite the examples of research above, few design researchers focus their efforts on 2e/DME. The lack of existing design-driven research in this area strengthens the importance of my proposed research.
Target Communities
My ideal target audience for increasing understanding of 2e/DME and awareness is the whole of the UK public. This is a wide audience but it can be approached in a smaller way by breaking it down into smaller groups, such as teachers, educators and parents. Awareness can also be brought into the workplace, as even in my own working environment there is an ‘Inclusion and Diversity’ taskforce but they rarely speak about neurodiversity and never about 2e/DME.
In an effort to reduce the broadness of the goal of the entire UK general public, my target community for engaging with my design research is children aged 11-16 who identified with 2e/DME. I will be centering my research around what it is like to be a young student identified with 2e/DME in Britain.
Engaging Partners
I hope to engage with this community through the charity partners Potential Plus UK, and the University of Glasgow’s Scottish Network for Able Pupils.
Potential Plus UK’s website states;
“Our aim is that every high learning potential young person in England and Wales receives appropriate support and challenge to secure well-being and high attainment with the skills, resilience and confidence to succeed at each stage.” (2020)
While they are a high-learning-potential charity rather than specifically 2e/DME they also support 2e/DME children. Partnering with them significantly increases my ability to find participants and provides clout behind the intention of the research.
In Scotland, the Scottish Network for Able Pupils or SNAP state:
“Working in the field of both Special Educational Needs/ Additional Support Needs and Gifted and Talented Education, SNAP have an interest and considerable experience of working with teachers as they support children of high ability.” (University of Glasgow, 2020)
The University of Glasgow SNAP conducts research and then provide findings to Scottish schools.
Approach & Site
A collaborative approach to my research will enable me to pay attention to voices in the community. Collaborative research relies on objects, rather than talking or watching. This playful approach can help engage target communities as we push for change and create opportunities to increase awareness. Rather than asking “Why?”, I ask “Why not engage the community in co-creating approaches to increase awareness about 2e/DME?”
I plan to ask 2e/DME children to express “what is it like to be 2e/DME?” through t-shirt design. My plan is to conduct this research in one of two ways (or a combination of both)
Cultural Probes:
I plan to use cultural probes as research method as this method is especially helpful to gather qualitative data based on participants’ self-documentation. It also brings the element of playful design to research. Kits are an ideal method when dealing with travel issues, such as a pandemic, or the high likelihood that participants will be widely spread across the UK.
In the kit, I will supply materials for participants to express “what is it like to be 2e/DME” through t-shirt design. I will ask participants to return photographs of their process of creating their t-shirt along with photographs of the completed item. They will be able to keep their creation.
Workshop:
If possible, this research can also be delivered through a workshop by bringing potential participants together at a community site.
The ideal site would be identified in collaboration with the partner organization. Potential sites include local libraries, community centres, or schools. The workshop method would be highly dependant on approvals and available sites, using Napier university as a site is not ideal as I want to find a neutral and comfortable space for participants.
One challenge in bringing 2e/DME participants together is finding these individuals and their location across the country. Consequently, the contingency site for this research will be to recruit online, and mail probe kits to participants as noted above.
Materials Required
I plan to include the following items in my probe kit/ workshop kit:
- Probe question printed on a card (explain there are no right or wrong answers)
- White, L t-shirt
- Coloured Fabric pen(s)
- Transfer sheet (for printing images and transfer)
- Fabric Paints
- Scissors
- Disposable Camera if participant indicates they do not have a camera available
Additional materials required for in-person workshop:
- Camera
- Printer
- Laptop/ Tablet for image search
Duration and Timing
The first steps in this project will be to get ethics approval as this proposal involves children.
After ethics approval, the next steps would be connecting with a partner organization such as Potential Plus UK, and the University of Glasgow’s Scottish Network for Able Pupils. Funding to purchase the necessary materials for the kits will also need to be considered.
I plan to reach out to potential partner organizations during early 2021. I will send a draft of this proposal (with necessary refinements following the faculty review) to the partner organization and ask for their collaboration. Together, we will collect data during the spring of 2022. The timeline for this project is guided by my part-time status and also allows time to investigate funding opportunities outside of these partners.
References
Blesch, A., 2012. Sternberg’s Triarchic Theory of Intelligence. [Online]
Available at: https://www.researchgate.net/publication/342918703_Sternberg’s_Triarchic_Theory_of_Intelligence
[Accessed 13 12 2020].
Brody, L. E. & Mills, C. J., 1997. Gifted children with learning disabilities: A review of the issues. Journal of learning disabilities, 30(3), pp. 282-296.
Carolyn R. Yewchuk, M. A., 1989. The Handicapped Gifted Child: Problems of Identification and Programming. Canadian Journal of Education, 14(1), pp. 102-108.
Coloured Fish Products, 2020. [Online]
Available at: https://www.facebook.com/colouredfishproducts/
[Accessed 13 12 2020].
Foley-Nicpon, M., Assouline, S. G. & Colangelo, N., 2013. Twice-Exceptional Learners: Who Needs to Know What?. Gifted Child Quarterly, 57(3), pp. 169-180.
Gardner, H., 2011. Frames of mind: The theory of multiple intelligences. New York, NY: Basic Books.
Haines, M. E., 2017. Opening the doors of possibility for gifted/high-ability children with learning difficulties: preliminary assessment strategies for primary school teachers. [Online]
Available at: https://rune.une.edu.au/web/bitstream/1959.11/23098/5/open/SOURCE03.pdf
[Accessed 13 12 2020].
Kaufman, S. B., 2018. Twice Exceptional: Supporting and Educating Bright and Creative Students with Learning Difficulties. New York, NY: Oxford University Press.
Lucinda – Laugh Love Learn Blog, 2016. Why Being British Stopped Me Finding Help For My Twice-Exceptional Child. [Online]
Available at: http://www.laughlovelearn.co.uk/2016/04/18/british-twice-exceptional-child/
[Accessed 12 12 2020].
Made By Dyslexia, 2018. Dyslexic Sperm Bank. [Online]
Available at: https://www.dandad.org/awards/professional/2018/experiential/26537/dyslexic-sperm-bank/#:~:text=Dyslexic%20Sperm%20Bank%20%7C%20Y%26R%20London,Out%2Dof%2DHome%20%7C%20D%26AD
[Accessed 13 12 2020].
Potential Plus UK, 2020. Dual or Multiple Exceptionality. [Online]
Available at: https://www.potentialplusuk.org/index.php/families/dual-or-multiple-exceptionality/
[Accessed 12 12 2020].
Robertson, S. G., Pfeiffer, S. I. & Taylor, N., 2011. Serving the gifted: A national survey of school psychologists. Psychology in the schools, 48(8), pp. 786-799.
Ronksley-Pavia, M., 2015. A Model of Twice-Exceptionality: Explaining and Defining the Apparent Paradoxical Combination of Disability and Giftedness in Childhood. Journal for the Education of the Gifted, 38(3), pp. 318-340.
Scottish Network for Able Pupils, n.d. School Leadership for Highly Able Pupils Project. [Online]
Available at: https://www.gla.ac.uk/media/Media_404022_smxx.pdf
[Accessed 13 12 2020].
The Good Schools Guide, n.d. Dual or multiple exceptionality (DME). [Online]
Available at: https://www.goodschoolsguide.co.uk/special-educational-needs/learning/dme
[Accessed 13 12 2020].
University of Glasgow, 2020. Scottish Network for Able Pupils : About Us. [Online]
Available at: https://www.gla.ac.uk/research/az/ablepupils/aboutsnap/
[Accessed 13 12 2020].