Why we need to talk more about AuDHD

In 2022, Em Rusciano’s address at the Australian Press Club captured the public’s attention, offering a rare and intimate glimpse into the life of a woman living with ADHD. Her speech was raw, resonant, and deeply personal, leaving many in the audience with a newfound understanding of neurodiversity. 

However, as we move into 2024, Rusciano’s journey has taken a more complex turn. Now navigating the compounded challenges of ADHD, autism, and perimenopause, she finds herself battling public scepticism and accusations of exaggeration. 

"I find it really upsetting that people think it's OK to debate if I am disabled enough, or even if I am at all. I just can't think of any other disability where that would be socially accepted," she says.

But Rusciano’s experience is far from an isolated case; it reflects a broader, underexplored reality: the coexistence of ADHD and autism, increasingly recognised as AuDHD.

What do we know about AuDHD?

The intertwining of ADHD and autism, while not a new concept, remains poorly understood. Studies suggest that Autism and ADHD very often coexist with around 40% of autistic people also having ADHD. This data challenges outdated diagnostic models that treated these conditions as mutually exclusive—a misconception that wasn’t officially reconsidered until the DSM-V update in 2013.

Rusciano’s realisation of her own AuDHD was more than just a diagnosis; it was a profound epiphany. She saw herself mirrored in the character of Quinni from Heartbreak High, portrayed by Chloé Hayden, an actress living with both autism and ADHD. Rusciano described the moment as a revelation: “That is how I walk through the world. Everything's assaulting me all at once…I'm fighting for my life, even just sonically, when I leave the house each day.”

The reality for many others is far less straightforward. 

The intersection of ADHD and autism presents a diagnostic puzzle that is frequently misinterpreted, leading to either a delayed diagnosis or none at all. The symptoms often contradict each other—autistic individuals might crave structure and routine, while ADHD tendencies lean toward spontaneity and impulsivity. This diagnostic ambiguity often results in people slipping through the cracks, left without the support and validation they desperately need.

Living experience with AuDHD

My personal experience with neurodiversity echoes these challenges. In 2023, I sought to reaffirm an ADHD diagnosis I received over two decades ago. What should have been a straightforward process instead became a costly and demoralising ordeal, resulting in the outright dismissal of my neurodiverse experiences. The financial barriers are staggering: a comprehensive ADHD and autism assessment can range from $1,500 to $4,000, making it inaccessible for many, particularly those already struggling with employment and financial instability.

And the story doesn’t end with a diagnosis. 

For many, including myself, the treatment of one condition can exacerbate the other. Rusciano’s experience with ADHD medication highlights this issue—while it alleviated some symptoms, it also brought her autism traits to the forefront. 

The controversial choice to self-diagnose

In response to these barriers, a growing number of people are turning to self-diagnosis, particularly within the AuDHD community. While this practice is controversial, it has become a vital coping mechanism for those who cannot afford or access professional diagnosis. Critics often dismiss self-diagnosis as unreliable, yet it represents a form of self-advocacy and survival in a healthcare system that frequently fails neurodiverse individuals. 

My understanding of my neurodiversity has been significantly shaped by the stories shared by others online. Social media, often criticised for its superficiality, has become a powerful tool for those with AuDHD to find community and share experiences that resonate deeply. This communal validation is crucial, especially when formal support systems fall short. Non-binary composer Mattia Maurée captures this well, describing AuDHD in a UK Guardian article as “cyclical,” marked by “big bursts of energy followed by a crash… AuDHDers can also be incredibly creative and innovative, maybe because of that brain hyper-connectivity.”

These insights have been revelatory for me, helping me piece together aspects of my own experience that I previously couldn’t explain—like why I tire so quickly despite having ADHD, or why bright lights have always caused me discomfort, traits that align more with autism than ADHD.

Where do we go from here?

The complexities of living with AuDHD require more than just awareness; they demand a fundamental shift in how we approach diagnosis, treatment, and public understanding. It’s not enough for professionals to merely acknowledge the coexistence of ADHD and autism—they must actively work to improve diagnostic practices and make treatments more accessible and affordable. 

As psychologist Tamara May aptly states in her article published in The Conversation, “It is important if you have autism or ADHD that the other is considered, so the right support can be provided. If only one piece of the puzzle is known, the person will likely have unexplained difficulties despite treatment.”

The conversation around AuDHD is still in its early stages, but it is a conversation that must be had—loudly, persistently, and with the recognition that for many, the stakes are life-defining.