Learning From Autistic Lived Experience

April 21, 2023

News Type:  Director's Corner, Weekly Spark
Author:  Helle Lord-Elliott (they/them/theirs), SPRC Senior Program Coordinator

Note on Language: This column contains gender-neutral identity-first language (i.e., “autistic person” as opposed to “person with autism”) as recommended by the Autistic Self Advocacy Network (ASAN). The author recognizes the individual’s right to use the language that suits them best.

In April, we celebrate and recognize those affected by autism. While the condition affects millions of U.S. children and adults, it is commonly misunderstood, which can negatively impact autistic people’s well-being and deprive them of life’s richness. By learning more about autism and listening to the unique insights of those experiencing it, we can all support autistic people in living their fullest lives.

Autism is a pervasive developmental disability that affects communication, movement, and sensory processing. Autistic experiences vary widely, but among the more common are masking (i.e., hiding one’s more obvious autistic traits in ways that can be unconscious or reactive) and sensory overwhelm. These experiences can lead to meltdowns (i.e., periods of emotional dysregulation) and burnout (i.e., states of incapacitation and exhaustion), during which the person needs extra support.

Research suggests masking and unmet need for support may be linked to increased suicide risk among autistic people. However, it’s crucial to note that meltdowns and burnout are not necessarily signs of a suicidal crisis. This highlights the critical importance of listening to and understanding the individual’s experience, and providing tailored accommodation and inclusion—rather than repression—of autistic behaviors, whether in a family, community, or crisis setting.

To truly thrive, autistic people need to be able to unmask—to behave wholly as they are. This requires safety and trust, for which they need to feel seen and accepted as their true selves. As an autistic person, I know this well. I know the pressure to conform, which I’ve experienced my whole life, and the intentionality and resolve it takes to express myself. Even as I wrote this column, I found myself struggling with what I wanted to say and what I thought I should say. I faced a very autistic conundrum: Do I have to mask to write this? How can I tell you about myself in ways that are relatable and appropriate? It’s like standing in front of a mirror and describing what I see to someone who then paints what I’ve said. Awareness of others’ perceptions affects all my interactions, whether digital or analog.

In our homes, workplaces, and communities, I encourage us to help create the conditions for all people to live unmasked, with authenticity and integrity. That can be done through accommodations such as acceptance of stimming (i.e., repetitive behaviors), use of assistive communication and sensory aids, and the development of individualized plans at school or work. It can also be helpful to facilitate positive sensory experiences and encourage special interests (i.e., favorite subjects or hobbies), which provide deep feelings of joy and purpose.

One of my special interests, for example, is dogs. When I was a kid, engaging in my special interest looked like reading every dog book at the library, memorizing dog breeds, and setting up improvised agility courses for my aging dachshund in the backyard. Today, I have my own training service that I run as a side gig and have done all sorts of dog sports with my own dogs. And, discovering my own autism at 25 lead me to develop a new special interest in autism and neurodiversity.

Addressing autistic-specific challenges requires autistic-specific solutions, empowering individuals to pursue their own special interests, express themselves authentically, and have the supports needed to meet social, sensory, and care needs. Barriers to doing so may be greater for autistic individuals at risk of experiencing racism, sexism, or other forms of discrimination, including BIPOC and gender nonconforming people. Studies have shown there is overlap between autism and gender diversity—acknowledging an autistic person’s gender can be supportive and even lifesaving.

Supporting autistics means promoting inclusivity, centering their individual lived experience, and not measuring their success against others. This can help promote well-being and prevent suicide among autistic people, and ultimately it serves everyone. Autistic solutions benefit more than just autistics; more flexibility, clear communication, a variety of expression, and diversity add richness to the world.

Helle Lord-Elliott (they/them/theirs)

SPRC Senior Program Coordinator

Southwest Prevention Center

University of Oklahoma