COMMUNITY-LED

PARTICIPATORY DESIGN

Overview

The project’s resources aim to create a guide for designing programs that not only serve the goal of developing early literacy but also contribute to social inclusion and the emotional well-being of participants and caregivers alike. In developing such a tool, community engagement through participatory research helps capture the voices and insights of stakeholders, prioritising knowledge and experience over mainstream, institutional knowledge (Udoewa, 2022). Active participation in the decision-making process allows community members (such as children with ADHD or ASD) to voice their pain points and expectations in designing the spaces and resources they use in a library setting (Bahrampour and deCourcy Hinds, 2022).

The methods of participatory design, which encompass co-design, consultation, advisory panel and other forms of community engagement, could vary to accommodate the project scale/ scope. Members of the neurodivergent community could become part of the research process, as both participants and researchers (Autism Research Centre, 2023). The data collection methodologies could include both qualitative (focus groups) and quantitative (surveys) approaches. It juxtaposes the designer and the community member in different combinations, such as “designer as community member,” “community member as designer,” and “community member as facilitator” (Udoewa, 2022). This in turn helps establish the members of the neurodivergent community as subject matter experts and ensures an open channel of communication and trust between the project team and the participants.

Co-design

Consultation

The project team and participants from the target community work in tandem to deep-dive into the research question(s) and design a study to address the issue(s). Involving experts with different perspectives from the initiation phase and throughout can help define the problem space early and open the doors to more advantageous outcomes (Autism Research Centre, 2023). By leveraging an open channel monitored by a guided process of discovery, ideation and development, the neurodivergent community’s voice can be made heard by turning the informants into participants, contributors, and partners - which can have a powerful and meaningful impact on the design outcome (Autism Research Centre, 2023).

Consultation

Community consultation helps define community opinions, values and needs through periodic engagement with participants. In contrast to the open feedback channel of the co-design participatory design, consultations are implemented periodically at various design/ development phases with each consisting of a closed feedback loop (Autism Research Centre, 2023). Consultation makes preliminary analysis available for public scrutiny and allows additional evidence to be sought from a range of interested parties so as to inform the development of the policy or its implementation (Autism Research Centre, 2023).

Advisory Panel

Guided data collection

The Ontario Autism Program Advisory Panel elects members of the neurodivergent community as subject matter experts, offering insights on ways to better support children and youth on the neurodivergent spectrum and their families as required by the project’s scale and scope (Ontario Autism Program, 2019). The panel size can be modified as needed to ensure that it represents the full diversity of the neurodivergent community, including parents of neurodivergent children and youth, clinicians, researchers, service providers, former public servants and others experienced in engaging neurodivergent individuals and groups. The panel can be consulted on a periodic basis using a blend of open and/ or closed feedback loops (Autism Research Centre, 2023).

Guided data collection

Focus groups, in-depth interviews and surveys are instrumental in unearthing experiences and insights from members of the neurodivergent community. While focus groups guide participants through deep-dives into research issues, interviews and surveys help structure and quantify the findings, helping to validate existing research data as well as offer new perspective(s) on how to better address the fundamental needs of neurodivergent children (sensory, social inclusion, etc.) in a library setting. When following this method of participatory design, the research/ project team must be transparent about their intentions and the purpose for which the data is being collected and to be used, including the data collection process, the real-world impact of the research, and access to the findings post-research (Gowen et al. 2019).

CASE STUDY: Participatory design

Image credit: Matthews, 2022

In 2021-22, the Bard High School Early College Queens (BHSEC Q) partnered with the Abled-Disabled Alliance (ADA), a student affinity group actively promoting diversity, equity and inclusion in the workplace, kickstarting a renovation project to accommodate members of the neurodivergent community with visual-spatial modifications, literacy programs and other initiatives (Bahrampour and deCourcy Hinds, 2022).

The co-design approach encouraged the library to showcase materials with colorful, eye-catching covers, such as:

Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Landau (2021)
The Pretty One: On Pop Culture, Disability and Other Reasons to Fall in Love with Me by Keah Brown (2019)

It also fostered the inclusion of resources authored by neurodiverse individuals: blind authors M. Leona Godin and James Tate Hill, deaf poet and journalist Sara Katz, and Amanda LeDuc, who has cerebral palsy.

Drawing from the participatory design, the library also added a disability studies course called Disability and Equity to nurture DEI, which enables students to research on how libraries could support the learning, physical and emotional needs of all individuals/ communities.

The students also recommended the inclusion of a wide array of sensory collections/ environment inclusions:

Removing or reducing intimidating stacks, transitioning from a “higher” to a “wider” focus and making the resources wheelchair accessible and keeping display materials at eye level
Including curved shelves or coves to foster privacy and reduce overstimulation
Including floor cushions or bean bags
Retaining study carrels with wooden dividers to help students focus more and to reduce overstimulation
Toning down the lighting to more optimising levels
Providing fidget toys like squeeze balls or a small bin of sensory beads
Noise-cancelling headphones to eliminate distractions/ overstimulation
Incorporating soft, sensory surfaces/ “crash pads” to allow students with autism or sensory overload to run and jump on when overwhelmed
Providing vestibular situation through rocking chairs and/ or sway chairs

Multisensory environments such as sensory rooms including a wide range of light and sound effects (e.g., lava lamps, waterfall or a bubble tube, vibrations/ soothing sounds)

Learn more

SOCIAL MEDIA ENGAGEMENT

Social media and other online platforms offer a great way for researchers/ designers to connect with neurodivergent individuals and their families, caregivers, and other members of their community. Online fronts such as social media groups (e.g., Facebook, Twitter, LinkedIn, etc.) offer avenues for community members to connect (with the project team and with each other) and share experiences and insights over an open channel of communication. Reddit, for instance, has nearly 50,000 members on its neurodiversity community and approx. 1.5 million on its ADHD community. Thus social media can contribute to building awareness and providing a sense of community around lived experience.

Toronto Autism Group

“A place for Torontonians to connect and share information about Autism-related issues, including (but not limited to) therapies, education, advocacy, healthcare, services, activities and finding and making friends.”

Autism Ontario: Toronto Region

"... helping all autistic individuals and families in their communities have access to meaningful supports, information, and connections so they are equitably and seamlessly supported across their life course."

Autism Speaks Canada - Toronto

Celebrates autism and runs fundraising initiatives that "help build an inclusive. Canada where autistic people can reach their full potential".

ADHD/ADD Toronto and Surrounding Area

This private group is solely for the purpose of helping one another out, giving information of resources or funding for children or anyone with ADHD, ADD, ASD, ODD and others.

ADHD Parenting

This group assists in the parenting journey and is run by 3 ADHD professionals: an ADHD Parenting Coach, a Licensed Therapist, and an ADHD Sleep Consultant.

ENGAGEMENT WITH COMMUNITY ORGANIZATIONS

Community organizations foster outreach programs as well as community-led, participatory program designs by connecting members/ partners with developmental experts and training resources. As a community organization, staff members are in the unique position to observe and address the barriers faced by neurodivergent individuals and other members in their community.

Some of the other key roles played by community organizations that support support librarians in the creation of neurovidergent-inclusive storytimeS include:

Building awareness through social media engagement (open forums, docuseries, and website content)
Amplifying community voice through panel discussions in conferences/ summits, unearthing perspectives and actionable insights from members
Leading innovation through projects/ initiatives such as the ASI project, the first federated and fully protected global network for sharing genomics and biomedical data to accelerate research and develop precision healthcare approaches for autistic individuals
Financing research through grants and fellowships; e.g., the 2021 Community Grants program provided a total of $163,807 funding 6 projects focused on increasing childhood screening and timely interventions
Expanding access to resources and helping community members navigate their way to the right/ relevant material for early screening and intervention
Training a wide range of community stakeholders - neurodivergent children, youths and adults, parents, caregivers, developmental experts, medical practitioners, and library staff/ associates

Some community organizations focused in Toronto, Ontario and across Canada:

WoodView Canada, Project ImPACT

WoodView Canada offers a support initiative called Project ImPACT ( to coach parents of young children (four years of age and under) on the autism spectrum. The initiative is grounded in research and the principles of child development and Applied Behaviour Analysis (ABA). The project runs for 12 weeks, alternating each week between group sessions and individual coaching.

Centre for ADHD Awareness Canada (CADDAC)

A national charity that provides leadership in ADHD awareness, education, and advocacy for across Canada

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

Resources for parenting a child with ADHD.

EarlyON Child and Family Centres – City of Toronto

Programs for to parents/ caregivers and their children from birth to six years of age.

Centennial Infant and Child Centre

Providing individually designed programs, services and support to each child and their family.

Surrey Place

Providing integrated services and inclusive support in a safe and welcoming environment, teaching necessary skills to families and caregivers.

Toronto District School Board (TDSB)

The special education autism services department of the TDSB has developed a list of community resources for families.