Amplifying Autistic Well-being (AAW)

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Our project aims to amplify the voices of autistic youth with higher support needs (HSN), a group often excluded from discussions on neurodiversity and well-being (Green, 2023). Autistic people make up 1% of the global population (Cassidy et al., 2022), yet those with HSN are underrepresented in both research and advocacy (Dew et al., 2018; Russell et al., 2019). Our project includes a hybrid (virtual and in-person, with asynchronous options) symposium which invites creative submissions about wellbeing through art, poetry, and AAC from HSN autistics youth aged 18-30, especially those from the Global South and other marginalized communities. Our final outputs from this project will be to co-create a research article and create an international, representative network (of 100+ persons in the HSN autism community) that will identify practical steps toward improving well-being for this underrepresented population.

Autistics who are HSN, especially those from marginalized racial groups in or from the Global South (Kassous, 2024; Nair et al., 2024) are underrepresented in autism advocacy, research, and policy (Russell et al., 2019; Dew et al., 2018). HSN is often misunderstood as a monolithic category, but it encompasses a diverse range of differences and challenges, including communication, medical, sensory, and behavioral needs. Our definition (as it can vary) of an autistic person with HSN might include using an AAC device or gestures to communicate, may have a co-occurring intellectual disability, and/or may need high levels of support for daily living activities. We recognize that support needs can fluctuate based on life events (such as stress) and will invite contributions from those that currently or most of the time have high support needs. Despite the clear need for support from this group, and while there are some genuine attempts at including HSN autistic people in neurodiversity discourse, their voices are still frequently excluded (e.g., on social media, through research). These conversations are often dominated by neurodivergent people with fewer support needs and parents/caregivers.

This exclusion has serious consequences. Autistic people make up 11% of global suicides despite representing just 1% of the population (Cassidy et al., 2022). Mental health risks are even greater for HSN individuals due to communication barriers, sensory sensitivities, and systemic exclusion from adequate care (Camm-Crosbie et al., 2019). Access to mental health services for HSN individuals is limited, compounding their vulnerability to anxiety, depression, and even suicide (Maddox et al., 2020; Cassidy et al., 2020).

The marginalization is even more pronounced for those in the Global South and people of color, who face systemic inequalities and lack representation in global autism discourse (Kassous, 2024; Nair et al., 2024). Their lived experiences are underrepresented, which can lead to misrepresentation and ineffective support systems.