Co-Creating with Neurodivergent Youth

The neurotypical perception is not the neurodivergent reality.

What is neurodivergence?

Neurodivergence is a term used to describe the differences in how people’s brains work. There is no right or wrong way to perceive and function in the world, and all differences should be acknowledged and celebrated. The term encompasses many neurological differences, including, but not limited to, autism spectrum condition, ADHD, dyslexia, dyspraxia, and PTSD. Neurodivergent individuals will exhibit their conditions differently based on aspects of their lives, such as sex or culture. They will also experience the world in different ways from each other. Some individuals will also experience more than one condition. Intersectionality always has a role to play; this is important to remember to keep an open mind for awareness, accessibility, and inclusivity efforts.

Although neurodivergent individuals face many challenges in their lives, it is important to remember that traits of neurodivergence individuals include creativity, intelligence, innovation, resilience, and so many more. Museums have a unique position to foster these traits and must put in the work to co-create with neurodivergent individuals for a better, more comfortable museum experience.

Important terms to know:

Neurodivergent: an individual with less typical cognitive variables.

Neurodiversity: a recognition that not all brains think or feel the same way and that these differences are natural variations in the human genome.

Neurotypical: an individual with typical cognitive functioning and development.

Some statistics:

15-20% of the world’s population exhibit some form of neurodivergence.

1 in 44 children identified with an autism spectrum condition.

9.8% of children aged 3-17 are diagnosed with ADHD.

These numbers are expected to be higher due to a lack of diagnosis and “masking,” a learned behavior to appear neurotypical in any context.

Intentional language

When talking about neurodivergent individuals, avoiding ableist language and using positive language is important. Using “neurodiverse” to describe an individual with a neurotype that differs from the majority is grammatically incorrect. In turn, we recreate the “us and them” boundary that the term was meant to combat. Moreover, the term “disorder” implies a lack of order or an intelligible pattern, which carries negative contexts and can be a harmful term to some individuals. Of course, everyone will identify how they prefer, so make sure you are always using appropriate language.

Barriers to Cultural Institutions

Neurodivergent youth face many barriers in cultural institutions. Museums and other similar sites can be extremely challenging environments to adapt to. The light intensity changing throughout exhibits, unexpected audio, and crowded or confusing environments can all lead to emotional and physical discomfort that deter neurodivergent youth and their families from museums. Museum spaces can be extremely loud and overwhelming. Once overcoming the ability to adapt to the environment, understanding the information presented is an additional hurdle.

Crowds at the Metropolitan Museum in New York

Co-Creating with Neurodivergent Youth Participants*

Whom should we co-create with?

There are no better people to talk to than neurodivergent youth themselves – they will know firsthand what works best for them in a museum space. Other great people to talk to include guardians of neurodivergent youth, neurodivergent adults, and educators who work closely with neurodivergent youth in the classroom. These participants may know ways to help expand opportunities for neurodivergent youth that you may not have thought of before.

What should we do to plan a program?

Get to know your participants: What are their interests? What is their age group? What are they looking to get out of a program in a museum space?

Understand how the environment will impact the program: What adjustments are needed for a successful program? What additional accessibility needs need to be met to ensure comfort for neurodivergent youth participants?

Have a trial run: Introduce participants to the space before the program, so they can become familiar with the space, know where amenities are, and any adjustments needed can be made before the programming.

Additional materials and suggestions:

Neurodivergent youth experience the world in different ways and, therefore, will have preferences on what kinds of materials or suggestions for the program will benefit them. Discuss what materials will work best for your participants, and be open to suggestions. These can include, but are not limited to:

• Checklists. Checklists can encourage highlights of important information and encourage independent activities.
• Sensory backpacks. Backpacks can provide sensory toys, such as fidget devices, magnifying glasses, flashlights, etc., as well as headphones and weighted lap pads.
• Audio guides. These guides support learning for those with visual impairments and those with learning differences.
• Instructional materials. It is important to make clear distinctions between areas, such as what is off-limits, what can or cannot be touched, and where amenities are located. Take the time to create a sensory map that indicates where lighting, audio, smell, crowd size, and other changes occur to prevent surprises and help navigate the museum in a sensory-friendly way. Providing arrows on the floor or with signs for directions through exhibits can help with confusing environments.
• Quiet rooms and sensory spaces. Be able to provide dedicated quiet spaces or sensory rooms to allow for a break from overstimulating environments. This allows for an inviting learning area for anyone needing a break. If the museum is smaller and lacks space, consider creating a sensory-friendly outdoor space with shade and other sensory-friendly materials.

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  A sensory support backpack created by The Children’s Museum in Oak Lawn

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  Massillion Museum’s Sensory Room

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  A sensory map by the Museum of London

It is important that all museum participants feel accommodated, engaged, and seen in any cultural institution. By taking the extra steps to plan with neurodivergent youth, museums can become more inclusive and celebrate and support the strength and vibrance of neurodivergent individuals.

References

Centers for Disease Control and Prevention. (2022) Data and statistics about ADHD. Centers for Disease Control and Prevention. Retrieved November 21, 2022, from https://www.cdc.gov/ncbddd/adhd/data.html

Centers for Disease Control and Prevention. (2022) Data & statistics on autism spectrum disorder. Centers for Disease Control and Prevention. Retrieved November 21, 2022, from https://www.cdc.gov/ncbddd/autism/data.html

Fletcher-Watson S. (2020) Neurodiverse or neurodivergent? it’s more than just grammar. DART – Development Autism Research Technology. Retrieved November 21, 2022, from https://dart.ed.ac.uk/neurodiverse-or-neurodivergent/

Hutson, P. and Hutson, J. (2022) Neurodivergence and Inclusivity in Cultural Institutions: A Review of Theories and Best Practices. Creative Education, 13, 3069-3080. doi: 10.4236/ce.2022.139193.

*Although this blog post is focused on neurodivergent youth, the recommendations and material discussed can also be used to co-create with neurodivergent adults. Neurodivergence has no age; it’s vital to avoid infantilizing neurodivergent individuals.